MTHFR C677T Mutation: Basic Protocol

After working with 1000’s of individuals with this defect, I’ve developed a protocol which may help a significant number of people.

UPDATE 3/16/2015:
Having written this article years ago now, I must let you know that if ANYONE – with or without MTHFR C677T or A1298C snps/variants/polymorphisms/mutations – whatever you want to to call them – should follow the lifestyle, dietary and environmental recommendations.

Regardless of MTHFR or not, the recommendations for diet, lifestyle and environment need to be considered by all!

Now – the supplement recommendations need to be tailored to the individual – again – regardless of which genetic variants you have. Working with a physician trained in this area of medicine is key.

The recommendations of supplements are merely suggestions and ones that I may recommend to a patient or physician. They are not flat out must-haves nor must one take all of them.

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I want to make it absolutely clear that while the MTHFR C677T mutation may be common across a number of individuals, the outcome of supplementing with various nutrients can vary tremendously due to other genetic defects, dietary and lifestyle choices and environmental exposures.

Some of these recommendations require a full explanation. Due to the nature of this article, it is not possible to do so. If the recommendation is listed, it is critically important.

Let it be known that the information presented below is for your information only and is not intended to treat, diagnose or prescribe in any way. Use the information at your own risk.

Part I pertains to supporting both heterozygous (1 copy of C677T) and homozygous (2 copies of C677T) MTHFR mutations. Part II pertains to mainly homozygous individuals but may also be tried by heterozygous individuals if desired.

PART 1

The biggest differences in recommendations between these two types of mutations are:

folic acid needs to be avoided more seriously by homozygous individuals

the amount of methylfolate required for homozygous mutations is greater

the blood thinning requirement is greater for homozygous individuals

Here are the common recommendations for supporting those with C677T MTHFR mutations:

Typical Pharmaceuticals Recommended for the C677T MTHFR MutationThere are many pharmaceuticals commonly recommended for C677T MTHFR mutations yet they are ill-advised as they contain inferior forms of vitamin B12, little or no vitamin B6 or the incorrect form of folic acid.

It should also be known that all pharmaceutical drugs below contain food coloring, dyes, anti-caking agents or other compounds that should be avoided.

Deplin 7.5 mg or 15 mg (don’t recommend this often at all – very rarely)

Prenatal Recommendations for MTHFR C677T MutationA quality prenatal for those with this defect requires methylfolate, folinic acid and no folic acid. These prenatals are very hard to find. There are quality prenatals out there but many have only folinic acid which is not effective for those with C677T mutations. Methylfolate is needed to bypass the MTHFR mutation and folinic acid is needed in case there is any MTR/MTRR inhibition for any reason – along with other folate snps beyond MTHFR.

General Supplements which Dr Lynch Recommends for MTHFR C677T MutationsWhile these are the general supplements recommended by Dr Lynch, he never recommends taking them all right away.

Begin by taking the most important one first (depends on the individual) in a small amount for at least a few days to see how you respond. If you respond well, continue taking it and add in another supplement.

This way you can easily identify if a specific supplement or nutrient is giving you problems.

In general, those with C677T mutations have decreased ability to produce methylfolate, increased cardiovascular risk, increased risk of blood clots, increased pain and inflammation and increased chemical sensitivity. Recommendations below support the reduction of these issues by increasing the body’s inherent ability to restore function through nutritional biochemistry.

NOTE: If you are not sensitive to supplements in general, then it is recommended to start with a comprehensive multivitamin and multimineral as this supports numerous biochemical functions within your body. It also provides a fast testing ground to see if you respond well to numerous nutrients.

If you do not tolerate a multivitamin well, this is a sign that you must proceed more slowly and work on healing your digestion and dietary intake and lifestyle habits first.

provides buffering agents to neutralize side effects from environmental exposures

consider taking 1 capsule upon the onset of undesired symptoms from an environmental exposure

contains 125 mg of potassium per capsule so take caution if on potassium medications or having arrythmias

assists in reducing stomach acid/reflux symptoms

How much methylfolate to take?This is the big question that is asked all the time.

Experience demonstrates that those with 1 copy of the C677T MTHFR mutation do not need much methylfolate beyond what is found in the Optimal Multivitamin line.

The MTHFR enzyme is working at nearly 70% or so effectiveness in heterozygous individuals while in homozygous individuals, it is working at only 30% effectiveness (The effectiveness percentage varies from paper to paper. Currently evaluating the research).

Individuals who are homozygous for the C677T MTHFR mutation do need more methylfolate than what is in the Optimal Multivitamin line.

To determine how much more methylfolate you need, it is best to start low and work up. This allows you to safely identify how much you tolerate without triggering very undesirable side effects.

If you are heterozygous for the C677T MTHFR mutation, the recommendations below are likely not needed. You are welcome to try them but it is highly encouraged that you proceed cautiously in order to prevent side effects from excessive methylfolate.

NOTE: If you begin supplementing with methylfolate and you have inflammation unchecked, your symptoms may worsen. This is why it is critical that you are tolerating and taking probiotics, krill oil, turmeric along with improving your diet and lifestyle first.

PART II

Methylfolate Recommendations for those homozygous for the C677T MTHFR Mutation:Once you have determined you respond well to the probiotics, krill oil, turmeric and vitamin E, then you may proceed to slowly adding the following.

if you do not feel well, stop taking it and switch to taking 1/2 capsule of L-5-MTHF

if you do not feel well taking 1/2 capsule of L-5-MTHF, stop taking it. You are either receiving sufficient methylfolate at this time or you are not yet prepared to take it due to other mutations present or other health issues worsen from methylfolate.

Once you discover which methylfolate supplement you tolerate best: Active B12 with Methylfolate, HomocysteX or HomocysteX Plus, then work on adding in additional methylcobalamin via Active B12 5000.

Upon waking take 1/2 tablet of Active B12 5000 in addition to your chosen methylfolate supplement.

Do this for 1 week.

If well tolerated, take a whole tablet sublingually of Active B12 5000 upon waking in addition to your chosen methylfolate supplement.

Typically, only 1 tablet of Active B12 5000 is needed by most individuals; however, some autistic children or those with MTR/MTRR genetic defects require additional methylcobalamin.

Continue increasing by 1/2 tablet of Active B12 throughout the day – but not past 1 pm as it may inhibit your sleep.

Up to 4 tablets may be taken daily – ideally spread throughout the day to increase absorption – but again – not after 1 pm.

Methylfolate Side EffectsThese are common despite what physicians may inform you.

Common undesirable side effects of methylfolate must be identified.

headache

migraine

rashes

irritability

anxiety

joint pain

muscle pain

insomnia

depression

If side effects occur, then the amount of methylfolate you are taking needs to be taken under consideration and likely reduced. Talk with your physician before altering any protocol or supplement/pharmaceutical.

Many times one is not yet ready to take methylfolate.

There are other steps that must be taken prior to supplementing with methylfolate if these side effects occur.

If side effects occur, taking Niacin helps bind the excessive methyl groups which are likely causing the issue. Consider taking 100 mg or 1/5th tablet of Niacin if these symptoms occur. It is a good idea to have a bottle of Niacin on hand in case these symptoms occur from taking too much methylfolate. Be sure to swallow the 1/5th tablet of niacin – not chew or place sublingually.

Flushing is common from taking niacin in the most active form, nicotinic acid. This is not harmful and will subside in about 20 to 30 minutes.

Do NOT take a full tablet of Niacin. Begin by taking only 1/4 a tablet.

Cycling Supplements for Methylation BalanceSupplements and pharmaceuticals such as HomocysteX Plus, HomocysteX, Cerelin Forte or Metanx are designed to support methylation.

It is methylation that is severely disrupted in those with C677T MTHFR mutations – especially homozygous individuals.

Methylation requires balance.

If methylation becomes excessive, side effects will occur as noted above. This requires adjustment in your protocol.

There is a need for routine adjustment as our bodies are dynamic.

If you feel the side effects above, it is recommended you notify your physician and have them make adjustments.

For example, these adjustments may range from:

stopping all methylation-supportive nutrients

taking these nutrients 4 days on and 3 days off

taking them every other day

taking them only in the morning

decreasing the amount taken every other week

General Side EffectsIf you are feeling improvement consistently, then you are on the right track.

If you begin to feel heavy, tired, dry mouth, irritable, ‘toxic’, or otherwise ‘not right’, then something in your protocol needs to change.

These are all signs that one must listen to otherwise you are potentially increasing the circulation of toxins and not eliminating them properly.

These side effects can be eliminated quite quickly through a pure vegetable and fruit juice diet for at least one day. This means producing your own juices at home via a quality juicer such as Champion Juicers. Prepare mostly vegetable juices with some fruit juices to increase the taste.

Taking a capsule of Neutralize or some Niacin also helps offset many side effects.

Conclusion
The above recommendations will help a majority of individuals who have heterozygous and homozygous C677T MTHFR mutations.

468 Responses to “MTHFR C677T Mutation: Basic Protocol”

This is a very easy to understand article, which is a boon when so many MTHFR articles seem extremely complex. Considering so many people suffer from some sort of MTHFR gene mutation it is important to offer information that people can digest and understand easily, very well done!

I am new to your site and was just diagnosed as homozygous for the C677T mutation. I am 33, but have been trying for many many years to figure out exactly what is going on with me. Since a child I have always slept at least 11 hours, but always remain fatigued. That was just the beginning of my issues. Even to this day I get at least 10 hours of sleep but never feel rested. About 3 years ago I tried the HCG diet. Within 3 weeks I felt like a brand new person and had energy and was actually able to stay up till 10pm. While doing that diet was when I discovered I had a gluten sensitivity. So for the past 3 years I have been GF. That has improved my stomach issues (including achy joints as a child and constant bloating). I also had a colonoscopy and endoscopy to test for celiac, but everything was negative. However, I should also mention I was already GF at that point and only ate gluten for 3 weeks before the test and I am not sure if that would be enough. I thought being GF would also help my fatigue, but it has not. So I just recently started seeing an endocrinologist. I thought maybe there was more to the food, so I have gone back on an all protein, veggie and certain fruit (low GI foods) no starch diet for the past few weeks. So far I haven’t felt much improvement. However, the endocrinologist is the one that tested me for MTHFR. My homocysteine level came back as a 10. The Dr. was going to put me on 15mg of deplin, but it wasn’t covered by insurance at all so instead he had me order 15mg of methlyfolate which I will be starting once it comes in. After reading all these posts I hope that isn’t too much to start out with. The Dr. said we would start there and then see if I can go down to 10mg.

There is a lot of information here and a lot I can relate to. For example, cervical dysplasia which I had many years ago and increased allergies too foods that now I have to carry an epi pen. I also should point out that for 17 years I was on the birth control pill. I stopped that 6 months ago, but just went on the paraguard IUD since there were no horomones.

Would you agree that I am going down the correct path? Do you have any recommendations since this is all new to me.

Dear Crystal: have you had thyroid and adrenal testing for your fatigue? FWIW, i have the same mutation and had a very bad reaction to 7 mg of folate. It seemed to increase my adrenaline, which was already high (probably due to undiagnosed low cortisol). You might want to start low and work your way up. Maybe it doesn’t matter if you don’t have high adrenaline like i did. You can buy folate over the counter starting at 400 mcg. Hope you feel better soon.

Thank you for responding. I recently had my thyroid tested. All of my numbers appeared to be in range (TSH 93), but the Dr. put me on the lowest dose of levothyroxin anyway because he said my thyroid was slightly enlarged. He thought it may reduce that and improve my other symptoms. After one month I felt no different and there was no change in my thyroid size. Only my TSH went down to 40 something. So he increased the medicine to 50. In regards to Adrenal Fatigue I was put on a strict diet of only protein, veggies and fruits (all low GI scale) for the past 3 weeks in hopes that would help. I have stil not felt a difference. I was also tested for Hashimotos and that was negative. However, I read recently that because I have been GF for 3 years there is a chance that could have skewed the antibody test for Hashimotos. Someone actually recomended that I eat gluten again for a period of time and get retested. Do you have any history with that at all?

Dear Crystal: I strongly recommend you read about the thyroid issue on this website: http://www.stopthethyroidmadness.com/
It will explain why TSH is not the right test and which ones are, and also how certain thyroid supplements are not the right supplements for many thyroid issues, and the issue of gluten.
I found it incredibly helpful and eye-opening and bought the book as a reference. I am not financially connected in any way to the website or book, it was just the best information I’ve ever found on my health issues and I have been reading a lot.

Dear Amee, Thank you for all of the recommendations. I am happy to say that my Dr. decided to take me off the levothyroxin and now I am just taking the methylfolate and methylcobalimin. I have definitely seen improvements in my fatigue level going way down and being more alert during the day. I would say I don’t really feel any side effects which is good. However, I am writing because I have read other posts and and I noticed Dr. Ben said he recommends lower levels of Methylfolate and if you are on a higher dosage something else may be wrong. I have been taking 15mg of methylfolate for about 2 months now and feel pretty good. Is it normal for a homozygous C677T individual to need these higher levels? Are there other things that I should be considering to get checked out. After being on the methylfolate my homocysteine levels decreased from 10 to 6.6.

My wife has had several chronic conditions as long as I’ve known her including Chronic Fatigue, Fibromyalgia, migraine and other conditions. Recently she’s been practically fully disabled by knee joint pain that, according to 2 orthopedic docs, and a rheumatologist has not no explainable source. She’s been prescribed pain medications like Lyrica and Cymbalta (sp), and has been given high does of prednisone with note noticeable improvements.

One of the many tests performed by the doctors she visited was an MTHFR genetic test which identified that she has 2 copies of the C677T mutation.

Based on the reading I’ve done on your website, it seems like this could be contributing to her issues, but I have a couple questions:

1) Is there any plausible explanation for her recent deterioration and specifically knee issues that could be related to this gene mutation?

2) Do you have a specific recommendation on how to introduce the suggested supplements so that we can be sure they are having a positive impact?

Dear Jason: I wonder if you have any mold in your house. I moved into a new house and months later starting having unexplained nerve pain as well as earache and muscle pain (went to many doctors). One doctor asked me if I had mold in my house and, while none was visible, an air test resulted in black mold. It turns out it was behind paneling in the basement, due to a crack in my basement wall where water was coming in. My pain went away the day after the mold was removed. Anyway, just a thought. For the fatigue and other issues, I wonder if she has had thyroid or adrenal testing? Migraines can also be caused by magnesium deficiency. Hoping you find answers soon.

I was diagnosed Compound Heterozygous MTHFR and homocystinuria just over a year ago after having recurrent miscarriage (three). I have two very healthy boys ages 5 and 7 and both pregnancies were easy and uneventful. Both boys were born very healthy and have no health issues. My question is, what happened? Could the interventions I had with both of them during labor (epidural and pitocin) have triggered the MTHFR and homocysinuria? If i inherited this from my parents, why weren’t these conditions an issue with my first two pregnancies? I have a healthy medical history although I’m pretty sure I deal with bouts of mild depression/hormone issues.

Sadly since my diagnosis I have done very little to help my condition (I did at first, but I got easily discouraged and very overwhelmed with it all). I have actually gone the other direction and gained 15 pounds over the last twelve months and have ceased exercising. I do take my Seeking Health Optimal Multivitamin when I remember.

I read your response to Janet (she is comp het as well) and I have written down what you suggested she take as far as supplements are concerned and would like to start my own protocol too. Since we are both comp. het. everything you listed for her is alright for me to take as well, correct?

Hi Dr. Ben,
Wow it’s great to find your site and thank you for your dedication to this seemingly new area of study. I found I’m homozygous 677T and want to get pregnant. I’ve been on a long journey of figuring out what the heck has been going on with me. I have been untreated for hypothyroidism for too many years, which led to Adrenal fatigue. I’m finally tolerating T3 and I’m feeling better than I ever have. My diet is 90% organic, mostly paleo, no sugar, caffeine, dairy, gluten, or alcohol. I eat leafy greens and sometimes juice them. I have a far infrared sauna that I try to use regularly. I exercise and don’t eat processed foods. I’m starting to understand which supplements to take and I am working with a practitioner who is knowledgeable in MTHFR. My question is: what do you recommend along with the prenatal that is mentioned above? I take D3, fish oil, C, and I try to eat a little liver daily (I freeze and make liver “pills”). I started a Methyl Mate B yesterday which contains 66mcg of 5MTHF and I first felt very energized and then got a little anxious. I also had insomnia last night. Nevertheless, I do feel a vitality that I’ve only felt intermittently. Thank you for your feedback. I wish you were available for a consultation!

Thank you for helping so many. I was searching for the symptoms of C677T and found this page, but read on one of your pages a response you wrote to someone “Being heterozygous C677T MTHFR is a risk but not significant.”

I wasn’t sure after seeing that if I should approach my issues from the MTHFR diagnosis angle or not. My test says positive for one copy of the C677T mutation, heterozygous for C677T.

My Mom has history of a large meningioma. I have serious structural and muscle pain for 26 years, migraines, ringing in head, chemical sensitivity, brain fog and recently my GI became too painful for supplements, and more.

It looks like quite a process to recover via the protocol you have so generously posted, so it would be a shame to be barking up the wrong tree 🙂

I am homozygous C677T and I am avoiding folic acid, but do I have to avoid cyanocobalamin as well? I am buying non dairy milks and they have Vitamin B 12 added to them, they do no list what kind it is. Do I assume that it is the cyanocobalamin?

Dr. Ben – how can one make a Skype or phone apt with you – I am in Canada and our medical drs no nothing about this stuff. I have double mutation for C677T and none for the 1298. I have severe digestion issues, chemical sensitivities now at 49 and oral allergy syndrome. My diet is very limited since getting sick aug 2012. I had a hysterectomy in sept 2011 and by the next year anything I ate went through me and I went from 170 lbs to 106 (currently 112lbs 5’5 female). They did a colonoscopy/endoscopy and found lymphocytes but all looked good so diagnosed with lymphocytic colitis. Nothing worked to reduce my inflammation and I started becoming sensitive to even the water I was drinking. I had severe geographical tongue and still have patchy spots now and then even after just recently thinking to stop using fluoride toothpaste. I have histamine issues as well and recently discovered this after stopping yogurt/bananas/avacados/blueberries shakes I had 3x daily. My 6 bowel movements a day immediately stopped to 1 but I can’t eat anything but chicken and beef and bison and asparagus and green beans. all organic. I have tachycardia big time whenever I eat. So where do I begin?? I am on ketotifen for the histamine and entocort steroid for the inflammation and LDN for inflammation as well. What can I do to bring my health back? I am very sensitive to vitamins so don’t take any and haven’t in over 1 1/2 years. Also gluten, sugar free (except some coconut nectar or palm sugar in flourless peanut butter muffins) for over 1 year now. I am afraid to try any supplement. I do Epsom salt baths almost every other day for 15mins soak. I finally feel I have my candida under control. Where do I go from here??? Do you offer appts ?
thxs
barb from alberta, canada

After 10 or so years of symptoms, I was finally diagnosed with this mutation a month ago (I’m 20) and am still learning about maintaining it. My doctor gave me Active B12-Folate with 800 mcg of methyltetrahydrofolate and 1000 mcg of Vitamin B12 (methylcobalmin) and told me to take 2 a day right away.

Well that was a horrible day I have to say. I felt “not right” and had pressure in my chest and felt like I couldn’t breathe; not to mention quite a few panic attacks. I went down to one a day and weathered through it and am still only taking one a day. Now I’m just having the occasional chest pain and migraines and headaches and overall “not right” feeling.

Does this have any link to GI problems? Chest, skin, joint, and especially abdominal pains are the bane of my existence.

I was diagnosed with MTHFR 1298C +/+ about eight months ago. My doctor recommended Thorne Methyl-Guard Plus, which contains 1,000mcg of methyl-B2 and 800mcg of methyl-folate. That had me sleeping about one hour a night and feeling like death.

He had no idea what to do next, so it was up to me to find out what was going on by experiment. I bought the individual components of the TMGP and added each one at a time. All was going well until I added the methyl-folate last.

To cut a long story short, I’ve been doing lots and lots of reading and supplementing with other vitamins and minerals and trying occasionally to add small doses of folate.

Some doctors (most doctors) have no idea about the intricacies of treating something like MTHFR. They were taught to treat in a way that links one symptom to one disease to one test to one drug. They were taught to remember lists of facts; they weren’t taught to think. You need to either find a doctor or alternative practitioner with detailed knowledge of MTHFR treatment.

I’d also suggest to not just treat the MTHFR defect. You need to do the 23andme.com test or the http://www.dramyyasko.com test to determine other defects in your methylation genes/enzymes.

I read that instead of taking glutathione directly, that it would be better to take glutathione precursors to encourage the body’s own production of glutathione. The reason being is the body is not readily absorbing the glutathione, but taking the precursors that encourage the body’s own production enables it to be absorbed. I’m wondering if you agree or disagree. And if you agree, is there a glutathione precursor supplement that you recommend in particular? Thanks!

(FYI, I’m compound heterozygous C677T and A1298C following a Paleo lifestyle with stage 3 adrenal fatigue which I’m currently addressing with Mary Vance NC, hypothyroidism NOT autoimmune on Armour 60, and Crohn’s disease not taking any medication, 2 miscarriages and wanting to try to get pregnant soon as I’m 35 so the glutathione is one thing much needed for my healing!)

Taking liposomal glutathione is a great way to boost glutathione levels. Taking reduced glutathione via a capsule is not effective as it breaks down readily in the stomach. The liposomal glutathione has been shown to raise blood glutathione levels quite well – and quite quickly. You want to be sure that the liposomal glutathione is non-GMO and non-soy. My company, Seeking Health, offers such a liposomal glutathione – as linked earlier in this comment.

Also – do not take glutathione while pregnant. Simply support with precursors via protein and prenatal – much safer route.

The Optimal Prenatal Protein Powder provides all amino acids, nutrients for pregnancy and supports methylation and MTHFR as well – and it is tasty/fast to take. I personally use the vanilla – I find that one better.

I bought the Liposomal Glutathione for my six year old son who has Autism. He is always low no matter what I do with supplementing precursors. His skin clears up and he focuses so much better along with clearer and more speech while taking the Liposomal Glutathione from Seeking Health. Thank you so much Dr. Lynch!

Thank you Dr. Lynch. I had one other product recommended to me which contained the glutathione precursors by someone who was helped by it tremendously with regards to adrenal fatigue (they are also MTHFR), but I was wary of it for the soy lecithin it contained. Your comments have me feeling it is inferior even if it didn’t contain soy.

I was planning on starting the optimal prenatal vitamins. Do you recommend the prenatal protein powder over the vitamin capsules? I was comparing the product labels and they’re nearly identical for the components. My concerns with the powder are: 1) I’m Paleo AIP and the protein source is pea and rice which I generally avoid and haven’t tried reintroducing to see if I tolerate them (yet) and 2) the use of sunflower oil which is a highly processed vegetable oil high in Omega-6 and causing a host of problems in lab animals including reproductive difficulties (and likely humans). I know the liposomal glutathione is also made with sunflower. I realize sunflower is preferable to soy, but still undesirable.

Being Paleo is fine for many people – but following one diet extremely is likely not balanced and may cause issues.

I definitely recommend the Optimal Prenatal Protein Powder over the capsules for a few reasons:
– Ease of use – so a pregnant woman is way more likely to get what she needs nutritionally
– Offers complete protein – which baby needs for development – not just vitamins and minerals.
– Morning sickness – has helped a few women (it’s a very new product for us) with severe morning sickness – stopped it cold.

You have to balance your fats – and not be extreme. I am not saying you are extreme – but making sure you are aware that we need both fats.

You can have your doc measure your RBC Fatty Acids and see how they are doing.

Thank you Dr. Lynch. I think I manage to keep my Paleo lifestyle quite varied and nutritious, even while following the AIP temporarily. I have protein and fat at every meal, and starch/carbs at most as well. In other words I don’t adhere to the low carb and low fat myths. It is obvious to my body that gluten and grains are not a friend as evidenced by the disappearance of bloating and weight from the mere removal of these products from my diet in August. My health issues will hopefully resolve now that I’ve gotten help to address severe adrenal fatigue and all its implications.

And I do agree we need balance in our fats, but I guess I just feel there is a better way to get Omega 6 than from a highly chemically processed vegetable oil. I’ll start with the capsules preconception and consider the powder if/when I become pregnant.

I had a pulmonary embolism back in Dec 2012 and learned that I am heterozygous MTHFR c677 – i have no idea anythinga bout 1298 b/c i don’t think i’ve ever been tested for it. I was on thinners for several months and am currently not taking anything – the doctors around here all kinda blow me off, saying “it’s no big deal” and I realize that having only one copy is less severe than being homozygous, but it was severe enough to give me a blood clot in my lung. I have chronic pain and cramping in my abdomen, back, chest, etc and no one can seem to figure out why, so I am wondering if MTHFR can cause that kind of pain. I honestly have no idea how to feel better so I think I will try to follow the protocol from teh above list (thank you for making such a great and easy to understand page!). I’m so frustrated that no one here, medical professional wise, can give me any information. One person I saw couldn’t even get the acronym for it right. Do you have any advice and can you tell me if pain like that can be related to this?

Dr Lynch,
I have had a rough 9 months after taking Bcomplex100 (1day) and bcomplex 50 for 15 days…neuropathy, pins and needles started and then severe leg muscle pain that hasnt really gone away yet. I was told to stop all supplements my neurologist said it was from the b6 and it would take a long time to heal my damaged nerves of b6 toxicity. 9 months later I havent eat fortifed cereals, taken vitamins and my dr has been thinking it is thyroid due to pain, hair shedding, coldness etc. but all meds like armour havent really helped me either so I asked to be tested and Friday I found out I am C677T homo type. I ordered the active b12 and the L-5mthfr b12 it should be here this week. I started Krill oil today and low dose asprin, already take probiotics(womens 90 billion) I am trying to find a Dr to help me treat this around my area, but is a start? and do you think the bcomplex in Aug bascially poisoned my system since that is when all my pain started? would niacin help relieve it or help clear the toxins? thank you for your time. ps I have been tested for everything you can think of, and know all my vitamin levels,most are very low including b6
that I am scared of now.

2 1/2 weeks ago my doc gave me a 2 week sample of deplin 15mg. I am homozygous for c677t 2 copies. I can’t afford deplin so I bought Life Extension optimized folate 1000mcg and began that a few days ago. For 2 days now I’ve been dizzy and faint. There’s a roar in my head, a swishing and ringing in my ears. I’ve stopped taking all supplements and it hasn’t waned at all. I’m curious if my body readily accepted 15mg then went into shock by switching to the reduced dose in micrograms. I’m not sure if I should stop my folate or take 15 of them. Or it could be something else entirely. I also started taking AdreCorwith licorice root for my adrenals and it has the methyl Bs in it. Help.

so much information. I am overwhelmed. I have recently discovered I am homozygous for c677t, although I have not, to my knowledge, ever had any related issues. I have always been healthy but have family history of various catastrophic vascular events. Since Jan of this year I have been battling a flare up of uveitis of unknown cause, and ran across this site because I suspect that in the next treatment step my doctor will want to try methotrexate.

My husband is also homozygous for c677t and had a stroke at 42 which was when we found out. That was 06 and his doctor has had him on Lmethylfolate calcium, 15 mg. I have begun taking it too with no noticeable effects, positive or negative. I am concerned about anything that could be a contributor to inflammation because of my uveitis. Our doctor seems to think the supplement is all that is necessary. husband also takes niacin, baby aspirin, and Crestor for elevated cholesterol. I do not supplement currently other than the methyl folate. our diet is on the healthier side of average but could definitely use cleaning up.

we have 3 kids ages 2, 4, and 7 who by default are all homozygous, no testing necessary. Oldest has ADHD, middle has chronic acid reflux, and youngest has recurrent eczema outbreaks on her hands and feet of a type unusual in children. I do wonder if any of their issues could be due to the mutation. It is primarily for them that I am posting as finding info on supplements for children and proper dosage has been difficult. thank you for the guidelines you have posted as they are the first I have seen that directly address supplements for children. their ped has never even heard of MTHFR and I have read elsewhere where parents were told not to bother until their kids were older. Seems to me that damage is already potentially occurring by then.

looking forward to exploring the site further. Thanks for your efforts here.

Recently had blood work done for my husband. His results came back as homozygous T/T MTHFR677 and homozygous A/A MTHFR1298. The doctor we saw gave him metafolin 400mcg and methylcobalamin 1,000 mcg. He was told to take it twice a day. There were other concerning things on his blood work that he didn’t really touch upon. I’m nit sure the doctor knew how to address them. We would appreciate any feedback. 26 yo male

Hi Dr. Ben,
I am homozygous for the C677t allele in the MTHFR gene. How does epigenetics play into this gene mutation? Is it possible with good diet and lifetstyle to not have the gene expression or do I need to assume that the gene mutation will require lifelong supplementation of methylcobalamin, methylfolate and baby aspirin?
My doctor prescribed metanx with 3mg of methylfolate and 2 mg of methylcobolamin. I did not tolerate that dosage such that it made me very irritable. I now take half of Seeking Health Active B12 (400 mcg methylfolate, 500mcg methylfolate) and a baby aspirin daily – amongst other supplements like omega 3, vit D, COQ10, etc.
Thanks

Hello Dr Ben,
I have had problems with medications for most of my life, was found to have CYP450 disorder about 6 years ago but continued to have reactions to meds, even the smallest amounts. About 5 months ago I had reactions to everything including my thyroid medication.. had to be taken off of it. The reactions continued culminating in severe reactions to almost all foods 3 weeks ago. The only things I could tolerate were organic beef and chicken.. have been able to add organic rice cakes, watermelon and organic sweet potatos in very small amounts.
Found last Monday that I have Mthfr TT and was put on a plant based B12 with plans to add B complex etc. I started having serious welty rash, diarrhea and chills within a few days of starting the supplement. After checking with a nutritionist I found that all the plant based B12′s have brewers yeast in them and she said I should not have any of those because I need to be on low histamine and that is not tolerated, methylcobalamin was recommended but all the supplements I’ve found for that have folic acid and I’ve
been told that will do alot more harm than good, that its folate I need not folic acid. I’m feeling like I’m walking a tight rope..I’m was just starting to get my symptoms manageable from 6 months of reactions. I know I’m allergic to sulfa and nsaids.. have always had reactions to sulfite foods. My hypothyroid is untreated now for 5 months and was also diagnosed with fibromyalgia. Thank you for your help, hoping you can give me some clarification on which supplement is best.

PS, My daughter has been diagnosed with Mthfr (1 T) and they took bloodwork on my grandson as he has multiple allergies.

I am a 21 year old female who has been on birth control for around four years now (bad menstrual cramps).
Although I am only 21, I had a stroke about three months ago. And was having non-epileptic seizures (dizziness) as a child. I just learned I have this mutation last week and so all of this is new. But I want to show by example how severe this can be. 21 with a stroke?!?!

Anyways, I have read a lot and I do not understand why reducing the intake of methionine is advised? Because the problem with the pathway is not being able to convert the homocysteine to methionine. And so it would seem logical that there would be lower levels of methionine and therefore we would want to increase our intake of it. Also, is metanx not as advised?

Dr. Lynch- thank you so much for this comprehensive website. I am just getting introduced to this whole world and I feel quite overwhelmed, but these resources are helping to clear things up. I am fortunate to only have a heterozygous C677 mutation and no 1298 C mutation. However, I am homozygous for both COMT and MAO-A. I had a very bad response to starting with Methylfolate (in MethylGuard) likely secondary to the COMT mutation. I have done a lot of reading and have come up with two questions that would be very helpful to have you answer.

1) Dr. Amy Yasko seems to emphasize addressing Lithium levels before supplementing with B12. Is that really important? I’m hesitant to mess with anything that does not need to be addressed as I seem to be pretty sensitive.

2) With the addition of COMT and MAO mutations- is the hydroxycobalamin a better source of B12 than methylcobalamin? (I seem to be pretty sensitive to anything that has “methyl” in it- like I said, I’m new to this so maybe I’m oversimplifying).

My plan is to begin with the Optimal Multivitamin and move on from there, but I would love a little input as I want to avoid the roller coaster I was on when originally put on multiple supplements by my naturopath.

I have one copy of C677 and have a child born with a few defects before this was discovered. A recent miscarriage at 15 weeks discovered the MTHFR by chance really. A friend told me to get tested….not a doctor. Turns out my six year old has the same copy too. I am desperate to try for another child as the loss of my baby was after 3 years of IVF. Currently on the Seeking Health PreNatal vitamin you recommend, was taking baby aspirin but getting stomach aches/reflux. Is there an alternative thinner or what do u suggest I take each day? Can I over methylate on these prenatal as the label says to take 8 a day but I feel the last two in the afternoon cause me to crash and be very aggitated at night. I await your wisdom.

Your agitation at night is an indication that you may not need the amount of methylfolate in 8 pills a day of the prenatal vitamins. With only one mutated copy of C677T, you’re still able to make a fair amount of MTHF, so you wouldn’t need as much methylfolate as someone with two mutated copies.

And with only one mutated copy of MTHFR, it’s less likely that is the reason for your miscarriage after 3 years of IVF. However, if the father has any MTHFR gene mutations, it’s possible the fetus could have had two copies of MTHFR mutated genes. You need to look at both your genes and the father’s genes to see if there are any other likely causes or mutations.

The father has been tested and he carries no mutated copies of MTHFR. I find it to be a real coincidence that as soon as I took supplements for C677 (a Prenatal) I immediately got pregnant after 3 years of IVF. The previous 3 years of IVF to give birth to my eldest daughter when MTHFR was not even known resulted in her being born with severe birth defects. The fertility clinic and doctors have all run many tests with the outcome being “Unexplained Infertility”. Time will tell if I am on the right track taking these PreNatals and now Baby Aspirin I pray that the jigsaw pieces have finally been put together as I am not getting any younger and there is a small window here.

23andMe tests for 59 SNPs of MTHFR, so you may have mutations in any of the other MTHFRs. And there are a number of genes other than MTHFR that impact the need for folate, B12, B6, and other supporting nutrients. You might consider the Metametrix UMFA test – for unmetabolized folic acid and MTHF, to make sure you’re getting the right amount of MTHF. There’s information about it at Dr. Ben’s other website Seekinghealth.com. The conventional folate and B12 tests measure all analogues, both the active and inactive, of those B vitamins, and you may have had misleadingly high results, not reflective of your true active level of those vitamins. I also like organic acid tests (OAT) as a general barometer of a number of indicators.

I have this gene mutation and also have histamine issues. I was looking at the optimal vitamin but noticed red wine something in there, is this common to cause issues in others?? I am trying to figure out which one of your methylate pills would suit me best. I show only yellow on the gene mutation for this one. But I am also really sick with mold issues, histamine issues etc. So I am wondering if I need to look at a form of methylate? The vitamin one looked the safest. But I wasn’t sure.

Hi Dr. Ben,
Thank you for your website and ALL your effort and research…..I have learned so much.

Through a blood test, it was identified that I have the A1298C mutation. Because I’m not responding well to my Doctor’s protocol, I wanted to get tested by 23andme.

I sent in my sample and received a message from 23andme that I did not have sufficient DNA amount in my sample. I retook the test – followed the instructions precisely. The second sample came back with the same results….Not enough sufficient DNA in the saliva sample! How do I increase my DNA in my saliva????

My Doctor is stumped….he has never heard of that before. HELP – I know I have other mutations – but how do I identify them if I can’t get my DNA levels up?

I had the same problem, 23andme were unable to extract sufficient DNA from my saliva sample. They did refund my $99.

I then bought the Methylation Analysis from Dr Amy Yasko. It’s a dry blood spot test. Some experts I have read think that this is a much more reliable method for DNA testing than the saliva sample method. Remember that the Yasko test is designed specifically for finding genetic problems related to methylation while the 23andme test is a very generalised consumer health risk test. The Yasko test is more expensive and takes longer but my impression is that it’s more reliable and accurate. Just my impression, for what it’s worth.

I have recently found out that I have 2 copies of C677T and I wonder what other tests I need to get the full scope of the genetics behind my health issues and now my family needs help too. The 23andme site no longer does genetic health testing, or that is where I could have had us get comprehensive tests.

What can you recommend for testing, without a doctor’s order if possible? We don’t know doctors who have expertise in this and my doctor wanted me to take Deplin, so I needed a more natural approach…and found you.

You are misinformed about 23andMe. They are still doing genetic health testing. What they are currently not doing for newer customers, because of orders from the FDA, is generating individual health reports about a very limited number of health conditions that a person’s genetic data would indicate a potential susceptibility for. These health reports never concerned methylation, and weren’t of much value to me, other than telling me I didn’t have certain very serious conditions.

What I have found to be very valuable is the raw genetic data that 23andMe generates. I initially used Genetic Genie to interpret my methylation and detoxification gene test results (about 70 SNPs), then I used the MTHFRSupport Variant Report to interpret another 170 SNPs. Livewello provides a similar service. Then I learned how to use 23andMe’s Browse Raw Data feature, and now I use Google Scholar to search directly for any genes or SNPs. If a person educates themselves, there is a wealth of information that can be learned from their raw genetic data.

I have read Dr. Lynch recommend 23andMe somewhere on these forums. No doctor’s order required.

My 18 y/o daughter has the c677t mutation and was recently diagnosed with hyperthyroidism and iron deficiency anemia. What supplements would you recommend. I know she needs to proceed slowly with the methylfolate since she has exhibited side effects in the past. Thanks for your advice!

I think my ND was a bit too aggressive with my therapy and I’d like some guidance with starting back up again. Question after background info.

I am C677T +/-, A1298C +/-. My chief complaints for seeking a naturopath was worsening chronic depression and nerve pain down both right arm and leg. I am hoping avoid adding any more antidepressants and ultimately get off Wellbutrin.

She started me several months ago on 3000mg fish oil daily and 5000IU vitamin D3. My latest D3 level was 77. At my most recent visit she started me on several supplements at once. Magnesium Glycinate 120mg daily, increasing 120mg each week up to 360mg. Mineral 650 by PE 2 daily for 2 weeks then 4 daily. Methylcobalamin 5000mg sublingual daily. Multi-B Complex by Integrative Therapuetics 1 twice daily. Deplin 7.5mg 1/4 tab daily, increasing by 1/4 tab each week up to 1 full tablet (choosing RX version was my choice in order for insurance to cover it)

I noticed no difference in my symptoms the first week or so. I had been fatigued before and continued to be fatigued. Then my fatigue started to get worse. I’d get up in the morning at 5 or 6am and by 9am I just wanted to take a nap. Of course I’m at work at this point. Caffeine couldn’t even lift me up out of the fatigue to the level I was at before supplements. I was feeling spacy, off balance, my thinking was sluggish and my energy was sapped.

I contacted her about this and made the decision to switch to OTC L-5-MTHF by designs for health 1000mg daily as she had no experience with the RX form and didn’t feel she could reliably predict what results I would have on that.

I then had my follow up appointment with her. My crushing fatigue had lifted the tiniest amount with the folate switch. We discussed my concern with the Kidney pain I had started to experience that was getting worse. She took a urine sample for culturing, CBC, CMP. The urine pH was off but everything came back normal on the labs. She had me increase the methylfolate to 2 daily for I week to then increase to 3 daily.

Lots of reading by me on the internet and I changed from placing the B-12 under my tongue to inside my cheek. I got an ah-ha moment when the crushing fatigue began not even 20 minutes later. That was 5 days ago. I stopped all B vitamins on that day and I am back to me pre-supplement self.

I know I will be eliminating the B complex that I’m currently taking that has folic acid in it.

My question is this. The video implies that I should start back at zero supplements and start fresh. But at the end of the treatment cascade he mentions that we of course should have vitamin D, Krill Oil, etc in place also. I’m confused; what basics should I leave in place before starting the B vitamins again? The video says to start with methyl cobalamin but the website says to start with Optimal Multivitamin first for a heterogygous mutation. Which should I do first?

Ok, so b minus along with trace minerals instead of the Optimal Multivitamin. Skip the calcium . Already have magnesium on board. I’ll wait on the vitamin c for now.

But what about the timing of adding the B supplements. Should I just add them now along with everything I’m already taking or take away some or all of what I am currently taking before starting to taper up.

I didn’t have any problems following your current video as I am a pharmacist and have done quite a bit of online research . I found the explanations on the heartfixer website regarding the different enzymatic pathways to be helpful. I was just confused by the conflicting information. I realize this is an ever evolving protocol. I’m just trying to ascertain what your current recommendation is.

In the video “MTHFR and Methylation Advancements_ Q and A with Dr Lynch”
Dr Lynch suggests starting cobalamin and Methylfolate at the same time. However his protocol starts them separately. I think he did this to avoid trapping, but he then says that this is no longer the case. Can anyone confirm.

In the same video he also suggest taking Folinic Acid, but this does not appear in the protocol.

For the past 14 yrs., I have consulted with a psychiatrist to overcome debilitating depression. Some anti-depressant have worked for short periods of time, but I have struggled more and more as the years pass by. Added to that, I seem to have Chronic Fatigue Syndrome and IBS.
About a year ago I found a Naturopathic physician. Recently she tested me for the MTHFR mutation and tests confirm one gene mutation (C677T). Finally I see hope that I can reverse the downward spiral and find life livable. I am only just beginning on this path and hope the doctors I have at my disposal will be open to learning and applying all that you have discovered.

Hello! I just have been diagnosed for a1298c heterozygous mutant, I had 2 miscarriages, 1DVT , 2 pulmonary embolisms and have psoriasis and hypothyroidism also. My doctor told me this mutation is not as complicated as the 677 but still i had all this complications, this tests I send to the US because In Guatemala where i live they don’t do them, I’m worried that my doctor is not well informed to treat me, what should I do?? Help!

Hi Dr. Lynch,
Can Thorne’s Basic Detox Nutrients supplement be helpful for methylation? It has many of the components that you discuss in your supplementation protocols but what do you think about taking them at the same time in one supplement?

I just watched your presentation on the Thyroid Summit, Dr. Lynch. Fascinating, thank you! I am heterozygous C677T. I currently take a prenatal by Thorne with 1mg methylfolate in three capsules. I take two capsules. I feel fine–not extremely different from before switching prenatals, but I did notice that I get a small migraine (much less severe and shorter than I usually get) each month since starting the methyfolate. I notice heart palpitations each day too. Nothing major but there. I also have hashimotos and am on the autoimmune paleo protocol to help heal my thyroid–which is working! I am very healthy and active, but also PCOS, which could be caused from the hashimotos. Anyway, I try to consume a lot of turmeric. I notice that I crave it. I also started introducing liver into my diet. I don’t like the taste but I feel amazing after eating it. There is something in it that I need. Do you think I need to either reduce the methylfolate I am taking or take another supplement to counter act this? If so, which one? Thanks for your time!

I just got blood work back indicating that I have C677T TT. I am so glad to have found your website! I am inclined to start with the active B12 as I am not chemical sensitive. Based on other blood work I am wondering how I should modify the basic protocol. The directly relevant additional results are:

So despite having C677T TT my B12 levels are high and homocysteine is optimal. I already take NAC, Milk Thistle, Turmeric, a cheap multi, ALCAR, choline (occasionally), vitamin C, magnesium/potasium, fish oil, and occasionally racetams. Most of this supplementation resulted from my concern over elevated liver enzymes in previous tests and a long term issues with focus and energy. Interestingly I have focused my attention on liver health and neurotransmitter support. It turns out this was the right track but I did not know about the potential genetic underlying cause.

FYI: I am a 34 year old white male, 30lbs overweight, a grad student (so I do a lot of sitting while researching).

Given that data, especially my homocytsteine and B12 levels how would you recommend I approach the protocol?

I also take vitamin D and Primal Defense Ultra probiotic. I don’t know if it is relevant or not but I also regularly supplement general MCTs and/or Caprylic Acid in my diet. I try to follow a diet based around the most natural, high quality whole foods available, avoiding grains, dairy and sugar (on about an 80/20 basis).

Hi Ben, I’ve had severe CFS for 25 years (since I was 16) & sleep onset insomnia since early childhood. I’ve just had results of MTHFR testing (C677T & A1298C) & it showed hetero for C677T only. I started using Methyl B12 & Methlyfolate around 18 months ago as I strongly suspected I had MTHFR issues & within 3 days felt a lot more energy. I have been strictly gluten free for around 8 years, I am dairy intolerant so occasionally have sheep or goat dairy only, I rarely eat processed food. I do have lots of gut issues & hormonal issues. My thyroid test always come back “Normal” & my DHEA levels are flatlined so I take supplemental DHEA. I know I have improved with taking the methyl B12 & Folate but I am still thoroughly exhausted & am bed ridden when not working (I am a TCM practitioner). I have suffered an on-going infection for 3 years that comes & goes, that is undiagnosed & get “everything” that is going around. A lot of what I have recently read re MTHFR & CFS seems to suggest that C677T is not so linked with CFS, yet I feel so much better on the supplements. It took 3 days to feel improvements & if I ever forget to take it, or can’t due to being unwell, it only takes 2-3 days before I am right back at baseline energies. Can you enlighten me of why I improve with these supps if it isn’t linked to CFS, are there any other tests I should get done, & what other supplements I should add to try to get my life back? Thanks in advance, Danielle

This is a great, comprehensive list of absolutely everything I have been wondering about since being diagnosed with homozygous C677T MTHFR. My doctor is always booked for months, and overbooked, so never has time to talk in detail about the questions that I wonder about every day. My brother, with the same mutation, was given 15mg of Deplin, so before I even saw my doctor, I started taking Methyllife L-methylfolate 5mg, increasing slowly to three times a day. When I went to my doctor, he gave me a B Complex vitamin with methylfolate (400mcg) to take twice a day. I thought it was weird that it was such a huge difference in dosage compared to what my brother was taking, and also a huge difference from what I then was taking on my own before seeing an endocrinologist.

This list does seem very long, and I’m in my early 20’s and cannot afford to take so many supplements. Which things do you think are most important? I also have very bad stomach issues, and my doctor tested me for Celiac disease which came back as negative. I see here that you say to avoid gluten, and I’m just wondering how MTHFR effects the body’s ability to process gluten.

I also was told that the average Vitamin D levels were between 70-80 units, and my test came back as 7 units, so I’m taking Vitamin D3 5,000-iu now. My lab tests came back saying that I was on the borderline of having hypothyroidism and elevated homocysteine. I got a prescription to be retested, and I saw your page on homocysteine, but I’m wondering how I should prepare differently for thyroid testing. I really would like to know one way or the other about both of these, and get them treated if there is even a chance that it could make me feel better.

I see that you’re very busy with lots of comments, so I hope you have the time to respond to me, but I totally understand if you can’t – I just have so many questions and it’s nearly impossible to get ahold of my endocrinologist for any decent amount of time.

Thank you for providing this most valuable information. My daughter is suffering greatly from this condition and has not been able to get help from doctors in our area. She reads everything she can find on this condition especially the articles you write. She already does some of the things you listed and will immediately start doing many of the others. You are helping so many people by offering your information and products. Thank you, thank you, thank you!!
Linda

Hi Dr. Ben, I would like to try your Optimal Multi-Vitamin because I am homozygous c677t along with a bunch of other mutation of course. I have an IgG reaction to Bromelain and Garlic based on Elisa Testing both of which are listed in the ingredients. Since these are not an IgE allergy do you think it would be ok for me to take the Optimal Multi anyway?

I wanted to thank you, Dr. Lynch. This website and your videos and podcasts have helped me and my naturopath to straighten out my supplements and get my health in much better shape. I’m heterozygous 677 and have been taking the wrong amounts of methyl vitamins for years. Your advice and knowledge and down to earth style have helped. Now I’m waiting for the results from 23 and me.

Hi Dr. Ben,
I have one copy of each 677 and 1298. I’ve had four miscarriages. I believe I’m pregnant now — only 7dpo, but a lot of signs. I’m taking your prenatal powder — 1 to 2 scoops per day, coq10 -4 capsules per day, plus the dha-, I take the L-5mthf on the days i only take one scoop of the prenatal. Do you recommend anything else to help sustain this pregnancy. Thank you for any insight.
Bri

Hi David, thanks for your interest. Years ago, in my experimentation with vitamins, I had started taking B12, and since I do a lot of research always, into my supplements, I eventually started ordering methyl B12 because I had read it was better absorbed. One day I took 5 and felt so incredibly better that it was like night and day. It was some time before I started taking folinic acid, but again I had read that the folate form was better than the folic acid form. This all was before I knew anything about MTHFR. My testing for that was very recent, and now I know so much more than I did before. (I’m heterozygous 677, and I’m waiting for the results of the 23 and me test).

It’s kind of embarrassing to admit the quantities of B12 that wound up working for me, but my theory is that the B12 was masking my folate deficiency. I don’t really understand the way these things interact. But here is what I’m taking now: three Thorne Stress B complex a day, which has 100 mcg of B12 and 200 mcg of the 5-methyl folate. I’m taking some additional methylfolate in the 5-methyl form, and am still working on the amounts. I take about 4 a day at 400 mcg each (Jarrow), and I also still take folinic acid, about 4 a day at 800 mcg each. The methyl B12 I take in 5000 mcg capsules, and now I’m taking three a day. So now that you know what I’m taking currently for the methyl vitamins, I’ll tell you what I used to take. You have to realize that I’ve also been working very hard on my digestive problems that have been affecting my absorption, and I’ve made really good progress with that. Ok, so here goes: I used to take 8 folinic acid a day (@800 mcg), and 24 methyl B12 a day (@5000 mcg). Every time I took my vitamins (4 times a day) I would have to take 6 methyl B12, @5000 mcg. (That’s not a typo!) Every time I tried to cut it down, I would get a very sore tongue, and my fatigue would be worse. Then I started experimenting with the folinic acid, and that got up to as many as 30 pills a day of the 800 mcg pills. But it leveled the interaction between the two, I think, because I felt better, and I was able to back off on the B12 somewhat. And now that I understand overmethylation, I’m doing much better on my amounts. I really appreciated Dr. Lynch’s advice about waiting, if you feel ok!

I now understand that some of my symptoms were overmethylation (I feel embarrassed to say!; like “duh”), and the other part of this puzzle seems to be zinc and B6 (P-5-P). I’m still adjusting things, but I have Solgar 50 mcg P-5-P pills and I’m taking it throughout the day, usually 2 at a time, and the difference is really astounding. From what I’ve read, some people’s bodies don’t hold onto their zinc and B6 very well, and it goes through them quickly, especially if they drink a lot of water. Zinc is another thing that I’ve been taking a lot of through the years, and I had B6 in my B complex before, but it wasn’t P-5-P, and it wasn’t very much. So this part of the puzzle has me very, very happy. Since starting the extra P-5-P (and I’m also experimenting with taking zinc citrate instead of zinc methionine), these are the things that are improving: my anxiety, my irritability, my energy level, my eyesight, my sleep, my concentration, my brain fog. As you can tell, I’m a person who takes a lot of supplements, and I also take fish oil, evening primrose oil, cod liver oil, vitamin A, E, D and C, chromium and vanadium, calcium and magnesium, selenium, probiotics (as bifidus), acetyl-carnitine, CO Q 10, choline, and every time I eat I take between 10 and 15 Doctor’s Best Betaine HCl. Lots of betaine.The Betaine is absolutely critical for me. My digestion really depends on it. I do not eat any grains at all, or carbs, or dairy, or sugar. I’ve been gluten free for quite a few years now. I have to be careful about the amount of fructose I eat. Right now I’m happy to say I’ve been eating spinach, and romaine, and kale regularly(thanks to Dr, Lynch’s advice and my better digestion) and I can even eat one strawberry a day (that’s a big treat for me; as I said, my digestion is so sensitive.) Carbs and dairy make me dizzy. It’s probably leaky gut. I also use quite a bit of l-glutamine for my stomach, and a little creatine. I used to eat a lot of nuts, but the phytates seem to affect my digestion negatively, so I only eat them occasionally now.

I could go on, but I guess that’s enough for now! It’s kind of lonely doing this. I have had a couple of good naturopaths helping me, but really I’ve been on my own mostly. It’s nice to talk about it. The information Dr. Lynch has given, and all of you here, has helped a lot. Thanks. And thanks for reading all this!

Marcia,
Thank you so much for your detailed information. I have a question. Did you originally start with methylcobalamin (B12) to see how it worked and then add in the methyl folate? Dr Lynch’s article says to do that but I know it’s an older protocol and not sure what changes might have been made. I’m homozygous for both COMT and MTHFR 677. I was working with a couple of practitioners. In the end I was on about 25 supplements and feeling worse everyday. A couple weeks ago I stopped everything. Slowly I’m adding things back in. Right now I’m on a basic multi vitamin from Xymogen. With that I’m taking selenium (I have hashimoto’s also). I took SAMe and MethylAssist from Pure Encapsulations but I stopped today as one of them was not making me feel good.

I’m going to go on NuMedica’s gut healing protocol. Though I’ve been gluten free for 7 years and grain free a couple of years I never did anything to heal the damage. So I’m starting that as soon as I get it.

I’m just curious if in the beginning you added in the methylcobalamin separately and later the methylfolate.

Dr. Ben,
My son (he’s 28) was just diagnosed-he’s heterozygous for both C677T and A1298C mutations. He’s battled with depression for years and is also now suffering from body pains. I’ve read your articles but this is new to be and very confusing. What supplements do you recommend he start with?
P.s. Thank you for all the information you have provided on your website.

Hi Dr Ben,
I also have pyroluria, as well as mthfr… I must avoid copper in supplements. Does this ‘optimal multivitamin’ contain copper?
I’m having trouble finding a multi without it. I don’t know why, as pyro and mthfr often go hand in hand.
I have 2copies of 677, and one of 1298.

I can’t begin to say how sick I am of pfaffing with food! I have zero interest in food and hate cooking. I am so weary of it all, but persevere. I can’t be the only one who is having trouble finding supplements to bolster their nutrient intake because of disinterest in food.

I take all my supplements seperately, and the bottles are taking over the house. Any multis that you are aware of with no copper?

Gloria,
Not sure if anyone got back to you on this. I have found copper free multivitamins in my research from both Seeking Health (Children’s Optimal) and Pure Encapsulations (several from of their Nutrient 950 line). Both brands contain the 2 forms of B6 recommended for pyroluria as well as methylfolate and methylB12. The Seeking Health one also has adenosylB12. Hope that helps.

I’d be interested in any info you have linking pyroluria and MTHFR. Can you provide links for any pages you found useful?

I also posted the same question a few weeks back but unfortunately I never heard anything.

My understanding was that by introducing these separately you would avoid methyl trapping.

However there is definitely a Dr Ben Lynch video on YouTube where he says that he needs to revise his protocol as he now suggests to take them together. I think the video that mentions this also features Ameer Rosic (but I could be wrong on that as there are 6 Dr Ben videos that I know of totaling about 9hrs!).

If you do find out then please do let us all know as I am currently working on improving my gut, diet and liver and then finally I will once again try the B12 and Folate)

Hi. I actually saw your post. I thought I’d try it myself to ask again. I wish we knew which video to look at. I was wanting to watch one of his videos where you had to pay to watch. It was $350 for a practitioner, and $150 for others. That’s not an option for me.

I’ll tell you where I am at. I am seeing a functional nutritionist who is extremely knowledgeable and has healed herself of almost exactly the same things that I have. Though she can order functional tests, she had me see a functional MD so he could order further tests. They are very much in line about how to deal with all of this…and everything that I was taking (supplements) was on Lynch’s protocol. I had some different ones also, but much the same.

What happened was that the more supplements I was adding, the worse I felt. Until the point where I felt so toxic, and had so much body ache in my neck, back and shoulders, and strange headaches that I stopped everything. Within a day or two I felt much better.

Now working with my functional nutritionist, she’s told me which supps are critical to get back on first. I am now introducing a new supplement every two days. If I feel ok, I add another one.

A piece of the puzzle that I think was missing is that I have to heal my gut first. I’ve been gluten free for 8 years and grain free for about 2 years…but I never repaired or replenished my gut. And since about 80% of our immunity lies in our gut…I think it’s a big factor. I’ve ordered NuMedica’s gut repair program. I’ve researched this a lot and feel good about starting this. I was at the Institute of Functional Medicines conference in Feb and spoke at length to one of their nutritional consultants. If you’re interested it’s NuMedica’s Gluten Sensitivity Support line. It has some amazing products in it. I also ordered methylcobalamin lozenges from them. I’ll start those after i get my gut underway.

I can’t tell you how much better I feel since I stopped everything and am now just adding things in slowly.

There’s more info I can give you if you’d like to connect with email. Don’t want to go on and on here. jilenore@yahoo.com.

Please do keep us updated on how you progress and any ‘must haves’ that you discover. I expect there hundreds if not thousands of people in the same boat.

There are a lot of similarities between your path and my own. As soon as I learned that I had C677T I looked at the protocol, ordered everything and started. After 5 days I stopped as the pounding 24hr headaches were no longer bearable. Since then after watching videos by Dr Ben, Neil Rawlins and Richard van Konynenburg I have a much better understanding of how the gut is linked to all of this.

I have also come across the ‘toxic overload’ of taking too many supplements (even though they are recommended). Even today I have just had to cut out the 4 most recent ones and I will try reintroducing them.

I have tried many things over the past 4 years and have also been prescribed the most dreadful things (Epilepsy tablets and Anti-depressants), I was even told I had ‘Mad Cow’s Disease’ (CJD).

Some things have helped but as you say you need to introduce things slowly and one at at time. But every now and then I slip up and have to back track. Usually with a bad headache

The best result I have had in the last 4 years (although not perfect) is too begin a Candida / SCM type diet. One thought my ND had is that I have systemic Candida. So I have cut ALL sugars (even fruit), grains, dairy, pork, and starchy veg. I can tell you it has been tough….and boring, but until 3 days ago when I added some simple supplement and vitamins into my regime, things had been looking much better. I pretty much went for 3 week straight with no brain fog, confusion or loss of balance. SO there is absolutely a link to diet.

p.s I will take a look at the NuMedica’s Gluten Sensitivity Support and also send you and email

I thought I’d let you know that I think I found a very good protocol for healing the gut. I’ve been on it a couple of months, going into my third and can definitely tell the difference. Also, though I rarely if ever eat corn, as it used to give me headaches, a couple weeks ago my kids had some non GMO popcorn. I have to say I ate quite a bit for a couple of days consecutively and I never got a headache. I believe this is because my gut is healing and can handle the foods it once couldn’t. That being said, I won’t eat corn anyway.

The product line is from NuMedica and it’s called their Gluten Sensitivity line.

If you decide to take it please let me know how you’re doing.

As for the other info, I am now working with an amazing naturopath who went to the methylation conference last year. Everyone in her office did. We’re doing some more testing. I’ll let you know where we go with the supps. When I showed her my supps (27 bottles I brought into the office), I did have a bottle of sublingual B12. I do believe she said to start with that. But my multi vitamin that she likes (Nutrient 950 without iron from Pure Encapsulations) does have some of both Bs.

Again, let me know if you decide to do the NuMedica line as I have a bit more info about how to take it.

Wow what a great website! I’m still reeling from all of the information. My ten year old daughter is homozygous for MTHFR C677T (as well as VDR Taq ,MAO-A R297R, MTRR A664A, BHMT-08, and CBSA360A). I’m heterozygous, and just trying to figure out what all of this means. My daughter has had years of pain, stomach issues, chemical sensitivities, food sensitivities, etc (as have I). Thanks for all of this information so I can try and help her more.

When I began taking methylcobalamin, with supplements, I knew nothing about any of this, and was trying B12 out after my naturopath said it would help with cortisol problems (I thought I was having problems from stress). When I happened to take several of the 500mg supplements (later I switched to 5000 mg), I felt so much better, with much better energy, that it started me on a long road of experimentation, but unfortunately I wound up using very high quantities of methylcobalamin for quite some time, and became quite overmethylated (I now know). As for the folate, the folate that I was getting was coming from B complex pills that had folic acid in them. That was probably at least a year, but it’s hard to remember. Eventually I read about folate being better than folic acid and I switched to folinic acid, not really knowing about methylfolate at all. I took quite a bit of folinic acid, for quite a long time and recently had increased the amount of folinic acid to very high amounts (and that was helping with the overmethylation somewhat, because I was taking too much methylcobalamin, and it was more in balance). Then I had myself tested for MTHFR, and learned more about the use of these supplements. I started experimenting, and added methylfolate into my supplements, backed off on the folinic acid, and backed off on the methylcobalamin.
My overmethylation symptoms generally come up as irritability, but if I don’t take enough methylcobalamin and methylfolate, I really can’t think. In my experimentation recently, I tried completely stopping the methylcobalamin (well, almost), and cutting way, way back on the folate, and all of a sudden I couldn’t remember my ATM card PIN. I changed it! Had to go down to the bank, I never did remember it. My poor brain is so sensitive. I think I really need the methylcobalamin to think. My brain fog and dizziness can be a constant companion sometime, and all day long I struggle with it, and take my supplements partially guided by it, as the day goes on.
I have been having good success with the recommendations I’ve read about, concerning pyroluria. The two important supplements for it are zinc and B6. If I take zinc citrate and B6 (regular B6 not P5P), periodically through the day when I feel the brain fog and dizziness, it seems to help. I also take P5P with the supplements that I take with food, and zinc, too, so in the end I’m taking quite a bit of zinc and B6. But according to what I’ve read, some people just can’t seem to hold on to these two vitamins in their bodies, they get bound up by pyrrholls (I forget how to spell that) and are excreted all the time. The warnings about taking too much zinc or taking too much B6 I just have to use my own judgment about, If I’m dizzy and this is helping, and I can’t find another solution, then this is what I’m going to do! If I’m a person who excretes it all the time, I don’t think it’s going to cause me terrible problems. The way it feels is that I’m going to have problems if I don’t take it. My anxiety level has decreased since I started taking the zinc and B6 during the day. Anxiety is another symptom of pyroluria.
The l-glutamin, d-ribose and creatine help my energy level and clarity of mind, too, and so does the selenium I take. I take quite a bit of magnesium malate, and calcium. I’m taking some B2 now, also (extra- I take a B complex a few times a day, and that has small quantities of the B vitamins).
I have a lot of trouble with fructose malabsorption, and cannot eat dairy or gluten or really any carbs. Lately, though, I’ve been able to eat a couple of strawberries every day, and that’s a big improvement for me. Everybody likes to have some kind of treat! I’ve been eating a lot of liver, since Whole Foods came to town and I can buy good quality liver. It’s recommended in the GAPS diet. The Bifidus probiotics that I’ve been taking are good for my stomach, and the betaine HCl I take is absolutely necessary for me, my stomach acid is very, very low.
I love to have people to talk to about all this. I spend a lot of time and effort (and money!) thinking and reading and experimenting. I take my B complex, which has methylcobalamin and methylfolate, I take two or three or four methylfolate a day, and about three methylcobalamin in a 5000 mcg dosage. I can’t take lozenges, because every single one of them has xylitol or some other kind of sweetener, and my sensitivity to those types of sugars is not good.
Some of the MTHFR supplements like glutathione I cannot take, I think because I’m an overmethylator.

Thank you for all the great work you are doing and information you are providing. I am homozygous for the C 677T allele and follow your basic protocol with some tweaking. I am postmenapausal and have been getting estrogen and testosterone slow release pellets implanted for 8 yrs now. I also take bio identical, compounded progesterone nightly. When you say no birth control or oral hormone estrogen you mean because they are processed through the stomach and liver right? Is it ok to continue taking them the way I do? I actually feel terrible when I’ve tried to stop as menapausal symptoms return. Thanks for any insight you can offer.

Hello 🙂
I recently found out that both alleles of the mthfr gene show the c677t mutation, indicating that I’m homozygous. I also have RA and was on methotrexate for 6 months. The doctors immediately took me off the methotrexate with my new diagnosis. Would you recommend that I get tested for blood clots? Is there anything else you would recommended? They now have me on 2mg of folic acid, baby aspirin, hydroxychloroquine, vitamin D for my vitamin d deficiency, and soon a new ra medicine. I also take birth controll pills Gildess.
Thank you…. M.G

Hello Dr Ben,
I am in desperate need of help, a little about me first.

I am compound heterozygous C677T and A1298C. I had a spontaneous placental abruption a few years ago at 6 months of pregnancy and lost a perfectly healthy son. I had an amnio, etc… I had another son just 2 years previous to the one I lost who is healthy and thriving. With my live and healthy son I was following my own supplement regimen based on how I felt, which I only found out later happens to be almost identical to what you recommend during pregnancy. With my second son who I lost at 6 months of pregnancy (I still had never heard of MTHFR at that point) I took a synthetic prenatal because my doctor aggressively convinced me to do so. She said my own regimen of vitamins and minerals bordered on child abuse and that I was only lucky the first time with my first son, that he wasn’t born with a major birth defect. I don’t know how I allowed myself to be convinced this doctor knew my body better than I did. This same doctor also told me MTHFR was not a “real” diagnosis of anything and it means nothing but I won’t go there… Now we are desperately trying for another child and time is of the essence because of my age.

My only chronic health issue I’m treated for is idiopathic hypothyroidism. On paper I look fine but was never able to conceive and/or carry to term and I had terrible symptoms. When I started taking natural replacement I was able to conceive and carry to term. My TSH is .01 which is very low but “normal” for me and where it was with the birth of my live and healthy son. I can tell if it’s off, I get many terrible symptoms back almost immediately. I take 3gr of natural porcine derived Canadian Thyroid (Erfa) a day, yes, we order it from Canada. I am overweight partially from my thyroid and partially from the fertility treatments which have been very hard on me physically.

I also have been tested and found to have activated NK cells (autoimmune issue) in the uterus which will almost always cause me to miscarry. I’ve had over 25 miscarriages. Somehow I was able to overcome this by myself with my first son, on my own supplement regimen. Now when I conceive again I need steroids and intralipids to overcome this issue. I have a different doctor of course. Interestingly this doctor told me he sees this commonly with patients that have MTHFR and especially those with hypothyroidism. He also said most of his patients with hypothyroidism subclinical or otherwise, also have MTHFR. He says eventually I will develop thyroid antibodies and I should watch for it in the future, I have none at this time.

Our lifestyle:
All organic diet
Free of gluten, pasteurized dairy, soy, and very little corn
Very little processed foods, maybe cereal for a treat or frozen ice
95% home cooked from scratch we grow most of our own fruits and veggies
Organic free range eggs, we now have chickens
Raw organic grass fed milk and yogurt I make
Organic grass fed meats
Fermented foods I grow and make myself
Canned foods I grow and can myself in glass
No plastic
We avoid as many chemicals as possible in our home and for personal care products
Supplements as you recommend

Here is my problem. I have recently realized I’m having a problem with P5P. Strangely I don’t remember having this problem before. In fact I’m sure I didn’t for some time. I took it daily. Now I can’t even take it once a month. It causes my hands to crack and bleed. I think my hands even swell a little. My joints don’t hurt but the cracking and bleeding does. This requires a week or more of Neosporin cream on my hands for it to heal. It makes life difficult because I cook so much and I’m a stay at home mom. This is my only symptom. I haven’t taken it for months now. I’ve never had anything like this before. I’ve even tried different brands.

Does this mean I already have too much B6 in my body? Should I just avoid it completely? Why would this just start to happen? Can I take B9 and B12 without it? Should I just take my supplements separately and skip it? I don’t know how this affects the management of my MTHFR and overall health. Perhaps it’s a detox reaction and I need chelation?

Please help me, I have little time left to have another child because of my age. We are all self pay and money is running out. I have spent the last 8 weeks researching this but this time I am unable to find anything anywhere. I have read about peripheral neuropathy but I don’t think that’s what it is, I have no pain at all, absolutely no numbness, heavy feeling, glove feeling, tingling, dropping things, etc….not even one symptom. I do have very very slight tingling on the ball of my left foot but that was always there for many years, before and after, and it’s very very little. I very rarely notice it. I’m sure it’s not related to the P5P reaction. When I stop P5P all symptoms go away. Please help me. Thank you for reading my situation.

I just got my report back from Seeking Health. I have MTHFR 677C>T TT.

Can you briefly explain with the various “T” s mean. Is it that I have one 677c T mutation and one 677c TT (double T) mutation? Is methylfolate still in order? I thought I read that methylfolate only helps if you have one kind of “T” situation, but not the other…

The TT is your particular test result and it means you have the double mutation of C677TT. The 677C>T is one way of showing that C is the wild allele and that it can get mutated to T. It is equivalent to saying C677T.

Yes, methylfolate and all the other supplements specified in the basic prototol are in order for you. Methylfolate is helpful for both heterozygous C677CT and homozygous C677TT situations.

I am 40 with 2 young kids. I live in Phoenix, AZ area. I am hetero C677T and normal 1298, and I have not been tested yet for any other gene mutation tests. I also have 10 times more than normal anti-TPO antibodies that makes me a Hashimoto patient.

I have 4 questions, please:

1. What any other DNA mutation tests should I go through? and what lab is a good one to use.

2. Should I do a food sensitivity or/and metal tixicity test through US Biotek or Cyrex labs?

3. Using a Ph urine stips, I am very acidic, so, how should I decrease my Ph?

4. I have never done any detoxification, what would be the best way to get rid of any or all kids of toxins?

Greetings Dr. Ben,
I wonder if you could answer some questions for me?
I recently discovered through some testing prescribed by Mary Schrick ND at the Full Circle Health Clinic in Edmond Oklahoma, that I have the heterozygous genotype for MTHFR C677T (C/T) and MTHFR A1298C (A/C) polymorphisms.

What exactly does this mean please?

I was given Starr Walker Methyl Support. It contains the following:
* Riboflavin 25 mg as riboflavin 5′-phosphate sodium
* Vitamin B6 10mg as pyridoxal 5′- phosphate
* Folate 2000mcg (1000 mcg as calcium folinate and 1000mcg as 6(s) methyltetrahydrofolic acid, glucosamine salt)
* Vitamin B12 1000mcg as methylcobalmin
* Betaine Anhydrous (trimethylglycine) 500mg
I take two a day
Is this a good formula?
Thank you for you help
Donna

I am homozygous C677T. I know I have other genetic abnormalities regarding clotting factors, but I couldn’t tell you what they are without my paperwork. I was tested for MTHFR by my neurologist after my mother had a massive blood clot to her Superior Mesenteric Artery, causing short bowel syndrome. I also have PCOS and insulin resistance, migraines, and syncopal episodes or “fainting goat syndrome,” as my neuro put it. I’ve known all this for almost 10 years, some of it longer, but I only recently found your site when I renewed my research efforts due to the possible banning of folate over the counter. I no longer see my neurologist due to insurance changes over the years. It’s been over 5 years, in fact, since I’ve had proper insurance to allow me to get back into my routine testing for these various factors, and I have only found a primary care physician in the last couple of years. I intend to educate myself some and present both my doctor and my sons’ pediatrician with information to help us get properly monitored and maintained. Since I know about my faulty genes already, I don’t have to convince anyone for genetic testing (except the ped, maybe), but otherwise, where do I begin when speaking to my doctor about these things? Also, in going over your protocol, I wondered what are the reasons behind going gluten and dairy free? I want to make sure my kids get an early start in being healthy, and so far we haven’t gotten off so great. They are 6 and 2 years old. My toddler is a great eater and will eat anything (almost) that I offer him and eat myself. My 6 year old is incredibly picky to the point that I’ve made the decision to ask his pediatrician about malnourishment. What he will eat, he usually only eats a few bites of and begs to be done. Milk and peanut butter have become his staples so that I know he’s getting calcium, protein, and calories, but I know he has to be lacking in so many other areas. What suggestions do you have? Thanks!

Hi Dr. Ben You are truly an answer to my prayers. I have recently been tested for Mthfr and have found that I have one copy of the 677 and 1298. I guess this maybe explains why I had migraines at a very early age, I have had 3 one at age 26 strokes and now had a coronary by pass. I have tried to eat healthy and at one point I was a vegitarian, I cannot take any kind of medication at all without it putting me in bed. I have constant pain in or behind my eyes everytime I eat anything, I am gluten free, I take probiotics and juice regularly . I realize that I need to detox but I get very very sick I dont even juice spinich as I find it gives me pain in the eye, Im guessing that the iron is to great for me, I quit taking b’s sublinqual as I suffered with terrible migraines. In all of the things that I think Im doing right ends up Im making myself worse. I have talked to my neurologist but he isnt familiar , At this point I dont know where to go,,..,Can you give me any idea of what my first step is I am already trying to detox and clear the gut, of any parasites as well., thanks I appreciate your help

Is anyone else homozygous for all three CBS mutations? I have not been able to find anyone else with the same genes or any protocols to follow if you are homozygous for all 3. I am also homozygous for MTHFR C677T. Thank you in advance!

Dr Ben, My daughter is 24. She is homo VDR taq, hetero Mao ar297r, math for c677t, mtrra66g, mtrra664a, bhmt 08, and cbs a360a NO call. She suffers terribly from CFS, depression…low basil temp, and anemia. Can you recommend how to start off? She is struggling being a new grad Dr of PT. HELP PLEASE. Jane

First a tremendous THANK YOU for your research and dedication. I can relate to so many of the stories I read on your site and for once I feel as though I’m not crazy. I’ve been battling with poor health, infertility, and anxiety for many years. I’ve been worked up for Lymes, and thyroid. I have poor egg quality, uterine polyps, and endometriosis. I’ve insisted for years that there is an underlying cause and I’ve been told time and again ‘it’s in your head, you’re fine.’ Countless members of my family have struggled with anxiety and depression, and 2 of my young relatives are on the autism spectrum.

I would like to begin your protocol while on the hunt for a practitioner that is knowledgeable about this condition. My question is – Knowing that I have been tolerating the Homocystine Supreme and have noticed little improvement in my anxiety and general well being, which of your recommended methylfolate combinations do you suggest I start with? And do I take this in addition to the multivitamin formulation in Part I?

I also plan to include the other aspects of Part I such as the Proboiotics, krill oil and Vit E.

I hope and pray that this discovery will help improve not only my health, but the health of my family and our future generations. I was brought to tears when I read your comment about knowing if you or a loved one has a MTHFR mutation is a blessing because now I can do something about it. Without options I felt helpless. Thank you for giving me options and restoring my hope. Please keep up the amazing work you do!! Our society is in desperate need of pioneers like yourself.

First a little backstory:
I was diagnosed with the homozygous mthfr when I became pregnant with my son in 2011. The doctors wanted to check my blood because I had a miscarriage at 19 weeks in 2007. I carried my daughter to full term in 2005, but had preeclampsia with her and severe hypertension and ended up having an emergency C-section. So, having that history, when I became pregnant with my son in 2011, they tested me and found that I have both copies. I was put on baby aspirin, vitamin d, fish oil, and you guessed it, folic acid. I carried him to term and everything was grand. Only thing was, I got conflicting information from my obgyn and the specialist that delivered my son. One said, take folic acid everyday and you’re fine, the other said, I don’t think you need anything but a baby aspirin. So it got me researching…and lead me to you.

And now my question:
I saw an alternative doc last year and he said I should take Metagenics Phyto-Multi with iron, are you familiar with that? it has the right forms of b12 (200 mcg) and methylfolate (800 mcg) that you recommend. I only take one a day though, instead of two, because quite frankly I’m nervous about the iron in it. I guess that means I’m only actually getting 100 mcg of b12 and 400 mcg of the methylfolate. He had me start on liquid methylcobalamin first, 1000 mcg a day for a week, and then start on the multi-vitamin. Do you think this is enough? I think the b12 makes me a feel a little flushed and I have anxiety/panic problems anyway but it triggers them. Why does that happen? Should I continue taking the liquid while taking the multi? that would be a lot of B12, I’m always afraid of overdosing on things. He also recommended that I take cod liver oil, I haven’t heard you talk about that and was curious as to what your opinion on that is. Thank you so much for your dedication to all of us out here wondering what to do! Reading your website finally gives me answers to symptoms I’ve battled with my whole life, and now I don’t feel as crazy! Thank you , Thank you!

I was tested recently and am heterozygous for the C677T polymorphisim in the MTHFR gene. My test also showed theat I have CYP2D6 gene deletion. I’ve taken 20mg of Lexapro for several years. Do the the CYP2D6 gene deletion, I am a poor metabolizer of Lexapro. (My test showed I should probably take lower doses of Lexapro and my genotype may impact drug mechanism of action and result in reduced efficacy.

My doctor had me reduce my Lexapro to 10mg (1 week at 15mg then down to 10mg). And, prescribed 15mg Methylfolate (she did not have me slowly increase it, I started on 15mg).

Two and half weeks in, I feel horrible…insomnia, I get tired and out of breath very easily, very dizzy, headaches, foggy, increased anxiety and just feel off.

Hello,
I am new to this site as well as the whole mthfr stuff. I just have a few questions to ask about this. But first, a bit of a backstory. I’m a 24 year old female, married for 7 years with two precious miracle boy’s. I say miracle because before I had my first son, I suffered 9 miscarriages. Each time I would get a little farther and lose the pregnancy. After several surgeries, 8 to be exact, I was diagnosed with severe endometriosis and found out that I have A- blood and would need RhoGam shots. We thought that this was the problem with my body and that I was fix! My OB put me on the LeupronDepo shot. I was miserable due to the side effects and was sure that my husband would kill me. We ended up moving across the country and I had my last shot at the end ofApril 2009. My cycle was never a problem. I was regular like a clock! I then found out that I was pregnant July 4th, 2009! I had no idea that this could happen! I found an OB and was seen every week for an ultrasound. We did nothing to try and prevent the potential loss. I began to believe that there was no way to prevent it. My pregnancy was just marvellous! My son was born May 4th, 2010. He was born 5 week’s late, but he was perfectly normal, healthy and wonderful! He weighed 9lbs 10oz and was 22inches long. He scored all 10’s on the APGAR ratings. We moved across the country again and was seeing a wonderful physician! When my husband and I decided to try for another child in June 2011, we went to the doctor to make sure that I was okay to try again. He gave us the go-ahead, but warned that it may or may not happen, given my history. I called him back a week later and told him I was pregnant! He couldn’t believe it! I saw him and he confirmed it. He started me on progesterone suppositories until I was 30 week’s along. Again, this pregnancy was just blissful! My son was born on time, on March 2nd, 2012. My boys are 22 months, 2 day’s, 2 hours and 22 minutes apart! Talk about unbelievable! He was born happy and healthy just as well as my first. However, he needed to have a chordee repair with a circumcision. I later found out that the progesterone causes this birth defect. But, other than that, he was perfect! I had trouble with myself after the pregnancy. I wouldn’t stop bleeding! I had a D&C, was on estrogens then progesterone, back and forth for the first year postpartum. I had to be careful because I was exclusively breastfeeding at the time. I then started to see a reproductive endocrinologist and he did several tests and found out that I also have adnemyosis by doing a hysteroscopie and obtaining a sample of my uterus. He then had me see a hematologist for some blood work. The results came back as me having VonWilibrans factor 5 and as they said, “both factors of the MTHFR mutations”. I was told that they couldn’t treat me as some how these two things balance each other out?! I was told to avoid anything that would thin my blood, NSAIDS, vitamin e, etc but to take 1200mg of b12 sublingually twice a day and to increase how much I take of folic acid a day as well. So, that’s what I have been doing. The doctor said that the estrogen was causing my bleeding on top of the clotting disorders and ordered to never be on estrogen. I bled for the first 18 months nonstop! I then stopped in October 2013. But it only stopped for a month and then it continued. We moved to another state, December 2013 and found a new OB for my care. I was told that I have two options, have a full hysterectomy or try the nexplanon birth control. I chose the latter as I can’t take estrogen and I am still far too young for that. We agreed and I had it inserted in March 2014. I have been bleeding now for six months yet again! I stopped for a week on the week before the implant was placed and it won’t stop! Just this past June, he did a laparoscopy to remove all of the adhesions and tissue growth. He ended up removing my left fallopian tube as it was just a tangled mess! I have never had such a horrible time with my menses. I have been regular since the age of 8. So, I guess I’m just trying to figure this all out since this is so confusing! I’m contemplating on having the implant removed but would like to know what I can do to regulate myself once again first. I’m so tired of being tired, weak and in pain from the constant bleeding.
So, in a summary, I have rH- factor, vonwilibrans factor 5 and both of the MTHFR gene mutations. What can I do to make myself better? I seem to be able to only find information about this and it contradicts everything else I’ve read or have been told. Also, could any or all of this have caused my miscarriages?
I’m sorry for writing so much and I will appreciate any and all idea’s that I can receive.
Thank you so much!

Sorry if this has already been addressed, but I have a question about Part 2 re this: “Once you discover which methylfolate supplement you tolerate best: Active B12 with Methylfolate, HomocysteX or HomocysteX Plus, then work on adding in additional methylcobalamin via Active B12 5000.”

So am I supposed to have the 4-6 capsules of HomocysteX Plus (or 4 capsules of HomocysteX, or 1 tablet of Active B12 with Methylfolate depending on which one I tolerate best) in addition to the 1 tablet of Active B12 5000?

Or is it just 1 of the Active B12 with Methylfolate, HomocysteX or HomocysteX Plus with the Active B12 5000?

The key is if you feel good or great, then that is what you want and keep note of what you took. Keep in mind some days you may need more and some days less. Depends on your exposures, moods, sleep, diet.

I found out earlier this month that I’m homozygous for the MTHFR C677T mutation. I’m trying to bring myself up to speed, and have a few questions.

I’m generally very healthy. I’m 25, pretty physically active outside of work, and absolutely health-minded. I’ve been gluten-free (in fact, grain-free, and processed foods-free) for about three years. My normal day’s diet consists of 1-2 cups of organic coffee in the morning with some organic sugar-free coconut almond milk in it, organic raw unsalted almonds/cashews/walnuts and a piece of fruit (usually an apple or orange or some berries) for breakfast, along with my multivitamins, some sort of protein such as organic boiled eggs, grilled chicken (no salt), or sliced roast beef (also organic) on top of a leafy green salad with lots of rainbow colored vegetables for lunch (topped with organic olive oil and lemon juice), and then an early dinner, usually lightly steamed broccolli, brussels sprouts, asparagus, etc, with more proten (salmon, chicken, turkey, etc). I snack when I’m hungry throughout the day (usually carrots, celery, more nuts, or another piece of fruit), but I do practice intermittent fasting, and try not to eat past 6pm or earlier than 10am if I can help it. I’ve never smoked, done any drugs, and I barely drink. I’ll have a glass of wine, if occasion calls, but it’s pretty infrequent. I really resist taking any over the counter medications when I’m sick or injured, and avoid even tylenol, except for the occasional unbearable headache (inconsistent caffeine intake induced) or monthly menstrual cramps. Benadryl I occasionally must take (about 3-5 days per year) if I’m having an allergic reaction (severe shellfish allergy that causes anaphylaxis; I also carry an epi-pen for that as well, although I’ve never had to use it, thankfully).

Until recently, I’ve been in grad school, so an entirely organic diet was cost-prohibitive, but when it comes to organic foods, I always buy organic meats and dairy, and I try to also buy organic fruits and vegetables when I can. I eat dark leafy greens daily. I take spoonfulls of fish oil every night before bed, and I take multivitamins (ultranutrient brand) in the mornings. I also take Galium heel homeopathic drops to improve my lymphatic function, at the recommendation of my doctor, and try to do dry body brushing once a week, sometimes twice. I use an elliptical at the gym two or three times a week, for about 30-45 minutes each time, and I do pilates. That sums up my general lifestyle/health practices.

Anyway, now that you have some context about my diet, lifestyle, and general health, I’m wondering how I’ve lived 25 years of my life with this homozygous MTHFR C677T mutation and been healthy? I always did very well in school and extracurriculars, and have never had any major health problems (knock on wood). I never had any behavioral problems, except I would sometimes be bouncing off the walls when I had a ton of sugar (candy/soda). My mom regarded that as poison/contraband in our house growing up, so that was infrequent.

The only thing truly peculiar about my health is that I used to get horrid hives when exposed to the cold temperatures growing up (cold urticaria). They were white, sometimes red, and welt-like, and would cover my whole body, and my eyes would even swell shut. I was an unrecognizable alien-looking person when this would happen to me. Sometimes, when it would happen, it was unrelated to the cold, and I would get large white welts all over my body without any explanation. We looked for causal connections between the episodes, and found none. The random hives perhaps seemed to increase in frequency when I started menstruating (age 13). My doctors all pointed to food allergies, hormonal changes, and perhaps stress (I was very competitive in music growing up, and would enter several high-stress competitions per year).

I should also mention that as a kid, when anything would abruptly hit my skin (think of a dodge-ball in gym class, or a high five, or if I would be playing jump-rope and the rope would hit my legs), I’d get an instant, huge welt, that usually went away within 20 minutes. Sometimes I’d sit out from gym class when we were playing contact games. Doctors said that was a hystamine reaction, and something was off about my hystamine. I never had any sort of treatment for it, and eventualy just grew out of it. That has totally gone away since childhood, and no longer happens, but I probably experienced that for 5-10 years of my childhood, if I had to put a number on it.

Anyway, other than the bizarre hives and contact-caused skin welts, which I have not experienced in the past several years, I’m totally healthy, and feel generally energetic, happy, and healthy. I’m fit (105 pounds, 5’4 frame), and I have no history of depression or other chronic health problems. I suppose I get pretty terrible menstrual cramps on day one of my period for a few hours right at the onset (severe pain, vomiting, paleness, light-headedness), but don’t a lot of women? Could that be related? I never had those symptoms from age 13-17 (pre birth control pills, when I actually had pretty easy periods), and only got them after I went off of birth control (20-25). They’ve gotten slightly better each year. I suspect my hormones were out of whack for awhile from the birth control. I guess I also should mention that for me, regular cycles are 34-38 days apart, rather than 28. No idea why. My gyno said I might not be ovulating due to the stress of grad school, during which I also worked close to full time. Because that doctor has always been insistent that I should go on another birth control pill, I recently switched to a new doctor who incorporates natural remedies into her practice. I’m hoping she can give me some better insight. I’ll note that she is opposed to prescribing birth control pills.

Getting back to my inexplicable good health (since it appears from this blog that many people with the homozygous mutation have serious health problems), it may well be that my mom knew her stuff with nutrtion, and was able to avoid some of the problems I possibly would have had, had she not given me cod liver oil, zinc, D3, and sublingual B12 every day as a kid (she is VERY health oriented as well, and has done quite a lot of research, since my siblings have had much worse health problems than I, especially food allergy and behavior related). She had us all nutrition tested at a lab when we were young kids, and they compounded vitamins for us based on our deficiencies. My brother, who had pretty bad health problems, became pretty much normal once he started with the nutrient therapy. Unfortunately, they always gave me high levels of folic acid, which I know now was not the right choice. On other counts, I think they were spot on with my supplementation.

Anyway, in terrms of what I can do going forward to increase/maintain my health and wellbeing, other than slowly switching my vitamin regime in the ways you outline above, and continuing to eat the dark leafy greens, perhaps with some increase in that regard, any suggestions for me? Since I’m healthy and feeing good, I’m hesitant to change my routine.

So Dr. Ben am I understanding you right your saying do not take 4mg of folic acid if you are trying to conceive or even once you do get pregnant? I have mthfr c677t one mutation and have just experienced my fourth miscarriage. I have one healthy little girl and was on baby aspirin and lovenox and 4 mg of folic acid with her this time that combination didn’t work…????

I like to have the option of adding more folate (or taking less folate). If you take too much, sometimes people feel wound up. Then sometimes people take 50 mg of niacin (it’s called overmethylating). I take my folate and B12 separately, and then I can control the dosages. People’s needs can change from day to day.

Hello Dr Ben,
I have been a vegetarian for 7 years and I have a mthfr blood clotting disorder. I forgot which one they are going to fax it to my children’s doctor. I have a question .. I have a 6 month girl and 2 boys connor 2 and cameron 8. What should I give them? My 2 year old had swallowing issues ( coulf not eat anything past puree until 12 months ) and asthma which are linked to the blood clotting disorder… my daughter who is 6 months refuses baby food a lot. their pediatrian does not want to test for it. Is there anything special I should Take I am breastfeeding my daugher so I am going to take the optimal vitamin, but if I took everything you listed I work ne bankrupt lol. Please help I know I have both strands.

I forgot to tell you I had two miscarriages and I am taking a baby asprin and extra folic acid which I am going to switch to your vitamin line. I am worried about being a vegetarian now, I do eat fish eggs and seafood. I eat a lot of soy products. Please help me

I don’t even know where to start and at my wits end. I am 37 and 5 years ago had gastric bypass. Although my weight is no longer an issue..everything else is. I tested positive for BRCA1, had a full hyst. I am very sensitive to supplements and medications. I got diagnosed with RA and it is vicious. Just got tested for MTHFR and have both mutations. My vit D is very low and dr said to try 50,000 1x week. Did that Sunday and was in the hospital for fainting, metallic taste, dizziness and completely out of it. So, now I am scared to try anything new. The only thing I take for my RA is LDN. I am considering having my bypass reversed as I feel it really messed up my immune system (gut) and whatever I try to do it fails. We eat whole, organic foods. I spend more on our grocery bill than our mortgage. 🙂 Anyway, I want to start this protocol, but just worried on where to begin.

Hi, I’m 36yrs old and just found out I’m homozygous mthfr c667t.
I have had a headache a weird headache for almost 3yrs.
I did have high copper but it’s lower now. I still have the headache.
It’s worse when my oestrogen rises I think.
I had high levels of folic acid and b12 in a blood test. Don’t have any heavy metals.
I am desperate to figure out why and get rid of them. I never have relief. Had an MRI 2 yrs ok. Showed nothing. Thankyou

Hi – I’m homozygous for c677t – I read your protocol carefully – thank you so much for the info! I am deeply grateful to you!!! I’m taking the optimal multivitamin you suggest in Part I plus methyl b12 1000 mcg and I’m feeling a million times better – but not completely. Question: In part II, you suggest cycling through various b12 supplements some of which also include a) pyridoxal-5-phosphate and b) methylfolate – which are also included with the optimal multivitamin. Is it safe to experiment with Part II protocol while also on the optimal multivitamin – or would be too much pyridoxal-5-phosphate and methylfolate? thanks! Aaron

I found out 3 months ago that I am homozygous for C677T. My functional medicine Dr. started me on Thorne Methyl-Gaurd Plus 3 caps/day, Orthomolecular Methyl B Complex 1 cap/day, and a multi vitamin called Pure Energy which is a private label for Body Logic md which contains 800 mcg of Folate. I hope to start trying to get pregnant for the first time in about 6 months. My Dr. said once I become pregnant to stop all supplements instead of the Methyl Gaurd Plus and then add a prenatal too. I am concerned about taking a baby Aspirin everyday while pregnant (which seems to be the recommendation from all the OB’s I have been calling) because it is a drug, and I do not know the long term side effects on a baby for taking Aspirin. Plus I have been dealing with systemic candida for 2 years after antibiotic use and I am afraid the Aspirin would make it worse. But I noticed you recommend Nattokinase, but I thought that ALL forms of Soy is bad. I already have high levels of bad estrogen which I am taking DIM for. What are your thoughts on this? And are there other things I should take as well for preconception? Thank you!

I just found out that I have the heterozygous genotype for the MTHFR C677T (C/T) and MTHFR A1298C (A/C) polymorphisms (compound Heterozygote). I also have hypothyroidism and have been on levothyroxine for about 10 years. My blood work also showed that I am deficient in Vitamin D and my ferritin is low. My serotonin and Gaba are also low along with my dopamine and glutamate but my epinephrine is high. Can you please suggest some supplements that I can take to head me in the right direction? I was thinking to start on the seeking health optimal multi with iron along with extra supplementation of vitamin d. Then slowly adding the active B12 Lozenge with L-MTHF. Please let me know your thoughts. Thank you for your time.

Hello! I have the heterozygous C677T mutation of MTHFR. First of all, this is the first website i find with so much information, i could point my endocrinologist here as she has basically no clue of how much changes with this mutation.
Anyway, my problem is that i am a transsexual woman and i developed a DVT 4 years ago, presumably because estrogen didn’t work good with this mutation. Is that the explanation, i know it increases risk for thrombosis because i should take estrogen, but isn’t there any possibility to still take estrogen with this mutation? I did not take since i had DVT, but it would help me alot to be able to take.
Here nobody knows nothing and has no interest in knowing anything related to persons with GID, all i know is because i learn alone…and i self medicate as well
Thank you!

Hi: I´m homozygous for the C677T MTHFR mutation. I bought the basic protocol, but I´m hypothyroid and I´ve low cortisol. I´m taking Natural Thyroid Hormone (NTH). then I ´ve serval question:
1.- The NTH when must I Take it, before o after •Active B12 5000.
2.- What can I take for the loe cortisol? and
3.- Do you Know o meet a Doctor in MTHFR in Mexico? in your list there is one but she is denist.
THANK YOU

Thank you for all that you do and all the research you have put into this!

Quick Q- what do you do if your COMT and MTHFR are conflicting? MTHFR c677t +/+ and COMT ++
COMT requires hydoxyb12 but MTHFR reqs methyl, what to do?
Just gave birth 4 months ago, highly stressed, no sleep, poor immunity, panic/anxiety has set off, adrenals are weak, allergies are going wild. On a positive note, diet is good, responding well to a low histamine diet and seeing an NAET practitioner for allergies.

Dr. Ben,
I am heterozygous C677T and A1298C. I have had lifelong issues, but the older I get different issues are cropping up. Most recently, uncontrolled sweating. My dr did put me on a miniville patch which has slightly lessened the issue, but doing standard housework leaves me in a flare and I have to take frequent breaks. Could this be due to inefficient methylation or overmethylation. . I do take a SL methylfolate with methylcobalamin tablet once daily. This started 2 summers ago. I sweat so bad that I have skin breakdown. I read your blogs frequently, but don’t remember if this has ever been addressed. Thanks so much for your ongoing research. None of my drs are very familiar with this. We need physicians on board in SC. Rhonda

Also evaluate your hormone profile with your doctor. Hot flashes possibly? Pre-menopausal? You may need to take some Black Cohosh or Calcium D Glucarate or both – but need to check with your doctor on this.

Dear ben, I am homozygous C677T and have been “cheating death” numerous times what I feel have been way too close to death due to my type of genetic mutation to assist in higher risk of many possible issues. My doctor refuses to discuss and even to look up your research for not only his own practice of learning to help ones like me but also says he don’t have the time either to do that I even asked him to at minimh minimum discuss your work and website with other doctors to try and spread awareness. Besides him I have tried many many doctors and clinics. I have even gone to the Mayo clinic here in Minnesota. I seen two “specialists” and neither knew barely anything of my blood disorder and one of them even belittled my blood disorder (this happens to me 24/7 with every doctor or nurse that comes in contact with me and even every time I’ve been to the ER for emergic times caused by what I truly believe is my disorder. In 2012 I was in the hospital for a severe saddle pulmonary emboli stretching from one lung to another. First two days I was in ICU and then another 4 days in regular part of hospital. It was December 2012, I was 21. I am a female. Since that time my health has gotten very bad as time has gone on. The biggest issue I’ve been noticing is memory issues, short term is the worst and now my long term more so this year has taken a turn and I’ll be lucky if I remember things from the past that I use to. Other most borhersome issue is my in my arms, legs face and extremities at minimum. It started last year I believe, in my legs and I assumed it wad restless legs until I began to feel the sensations spread to my arms next then extremeties and face areas. The feeling is uncomfortable and feels jittery like shocking or pulses as if nerve spasms? I am unsure but so far my guess is neurological such as neuropathy but I am uncertain. Doctors pass me off and belittle my symptoms and I struggle with more symptoms as well bit these are the top two of most concerning to me. Also if I am sitting on the toilet for more than briefly or more than a few minutes, my legs go numb from either my hips down and when they do I lose feeling in them and have to try and move them to gain sensation back to stand on them. During which they feel sensation of charlie horses that don’t stop for a little while. i have followed your advice on a gluten free diet starting a little over a week ago. What made Me try it again was the past 1-2 months I’ve been having bad pains in my stomach that feel as if I haven’t ever ate in my life and as if my stomach and intestines are being ripped out. Since I stopped eating gluten in my diet my stomach has been feeling somewhat better. I would like to try to eliminate dairy also but I am worried of how I would since I am low in vitamin d already and moreso that I am having a fairly hard time with eliminating just gluten but it is worth it to me for my health and am willing to do whatever it takes to feel better and be healthier. .starting with me having eliminating gluten from my diet. I currently take 2,000 mcg of B12 “spring valley timed release” , 200 mg “spring valley” B6, 250 mg “spring valley” B1 thiamin, 800-1600 mcg “spring valley” folic acid (I don’t think it is the type of folate you recommend but I am having a hard time knowing what step to take right now to get on the right track because I am doing all of this on my own because no doctors I’ve seen will try truly to figure out what’s wrong with me and I for the past over two years since finding out my MTHFR homozygous C677T, have also been making all my own guesses at vitamin doses (which have had changes in doses over these past 2+years) and I also take Coumadin, two 4 mg tablets daily for life to prevent another clot and keep my blood thinner (the coumadin portion was advised by and dose decided by clinic/doctor. I have been on coumadin since december 2012 of coming into the ER for my saddle emboli. I keep holding onto hope for advances in science which I try to learn as much as I can because I want to learn molecular biology and want to help advance science one of being the topic of individual genomics as one area I feel among many topics is important and needed in advancement in science. I also want to be a molecular biologist to try and help cure diseases and or to advance whatever medical and scientific research there is if not add new knowledge bases of science where possible which I feel anything in the world is possible if one pushes hard enough for it which cannot explain enough when I say that you give me hope for the future and for science and I highly appreciate your life of hard dedication to every aspect that you have put into this and it means the world to me that you are fighting to spread its awareness and fight this cause with all you have+ some. I struggle with depression and anxiety and have alterations in moods that I truly feel are due to my bodys chemistry based off this disorder and that my body doesn’t handle stress as well as it could compared to a “normal” human who doesn’t consist of this mutation variation in their DNA makeup. I do notice that at times it seems anxiety and stress can heighten the painful uncomfortable sensation I feel in my arms legs etc. I do want to inform you that I was a frequent cannabis user and felt it was the only thing that assisted in the neuropathic type pains. For almost a month I have not smoked cannabis due to me finding I again have inflammation in my lungs that doctor pointed out in my visit over a week ago that seemed to have gotten worse afterthe bronchitis I had which lasted over a week and I seem to be higher prone to bronchitis this is my second time this year getting it and I had it last year also. (I have been around secondhand smoke from cigarettes all most of the now 23 years of my life. Currently I confide myself to my room since my grandma is an intensively high chain smoker. I am worried about my lungs because as of march of this year when a CT scan was done of them, there were “white specs and blotches” in them which the doctor at Mayo that went over it said he didn’t know what it was and guessed it was asthma. I have an inhaler that I use for emergic hard difficulty in breathing and chest pain but I tey to only use it in severe cause the recommended 2 puffs or so isn’t enough to help me and so I have to administer more albuterol puffs and being I know it’s a steroid so it’s likely what causes me to feel bad shakes after taking it and can’t relax in my body. I really hope I can see your response and realize this is a lot that I am posting. I tried last year posting or was earlier this year and I don’t see it but I’m hoping it was for a reason that this one you’ll see since I feel I am a little more wiser than before and also have more up to date symptoms and discussion. I look forward to hope of hearing back from you and also in hopes that you can guide me on what to also do about the doctors’ awareness in minnesota at minimum/how to push this so they hear me out and to spread awareness of this very vital disorder/DNA mutation that many suffer from including myself.
All my love, faith, hope and support and blessings,
-Lyndie Salo

P.s. Dr. Ben, I hope I can follow in your footsteps someday and help the world with whatit needs more of (amazing scientific research&dedicated health providers.)

Hello,
D-r Lynch,I am homozygous 677CT and heterozygous 66AG MTRR.
I have been taking l-methylfolate for already 9 months. 3 weeks ago I added active b 12 of ‘Seeking health’. First, I started with 1/8, and then gradually reached 1/4 of b 12 tablet. Now I am taking 1/2 in the morning but I have a headache every day. Do you think I should go back to taking 1/4?

Thank you so much for this – it’s really helpful! I had two questions. Can you please explain why we should eliminate dairy? I thought by converting to organic, I would be okay. Also, what is the concern about cooking with gas?

Hi Dr Lynch,
Just wondering if you know about milk butyrophilin sensitivity? This showed up for me via cyrex labs test. I’m fine with casein etc.. I can’t find more info about it in general. Apparently it’s in the fatty partof the milk (which I thought was usually less allergenic). I really miss ghee and butter. I wonder if there is anything I can do to tolerate it again.
Thanks for any tips

New Research on how nanobacteria cause calcification in tissues that prevents antibiotics and other treatments from working. This nanobacteria commonly called Bartonella infection is very hard to detect and can only be detected using advanced methods. There is a newly developed method to overcome this nanobacteria calcification and once that is done treatments become much more effective.

Hi Dr Lynch
I have had 3 recurrent miscarriages and feel I have had contradicting information regarding folic acid since reading your sight. Following the third miscarriage blood work was done and results came back as MTHFR C677T Homozygous and PAI-1 4G/5G Heterozygous.

I was prescribed 5mg folic acid and on conception 75mg baby asprin and low molecular weight heparin. The strange thing is that my first pregnancy went to the longest term of 12 weeks when I wasn’t on the high dose folic acid. Also whenever I take pre-conception multi vitamins they mess up my menstrual cycle.

I would really appreciate your thoughts on this as I cannot see a response to other people’s pregnancy related messages. Desperate to have a successful pregnancy. Please please help.

I recently tested homozygous for the C677T MTHFR Mutation and — for A129C mutation. I haven’t had a more comprehensive testing such as Yasko or 23andme. (Not sure if this is something I should do?. In 2013 I had my B12 tested and it was high at 1129 (reference 211-911), although I had been taking Jarrow methylcolbalamin 5000 mcg about 1-2 a week on my own, which I chewed. Homocysteine was in normal range 10.1 (reference 4.5-12.4). This year I had my Methylmalonic Acid tested and it was .16 (reference <0.40). I've been told a few times that I don't need to supplement with methylcobalamin. My naturopath wants me to start 5 mg L5-MTHFR, twice a week. I am nervous to start this high a dose after reading what you have to say.

My medical history includes recent diagnosis (through salvia testing) of adrenal fatigue (very low morning and noon and skirting the edge of low in the evening times). I have Lyme disease, Babesia Duncani, Mycoplasma, Chlamydia pneumoniae. I have also had a urine challenge test 4 years ago which showed me high in mercury and lead. In 2008 I had total thyroidectomy for hugh goiter associated with Graves disease. Shortly thereafter, when my thyroid replacement dose was too low, my Lyme symptoms largely emerged, although I think it may have been in my body for a few years prior. I have done a number of rounds of oral antibiotics without much success, although treatment was interrupted a few times. I did IM injections of Bicillin with initial improvement, some backsliding in symptoms with addition of Biaxin and Tindamax. Eventually, I started to transition onto a different oral regime of antibiotics and just tanked. I don't know why. I felt very toxic after the whole process and ended up taking a break from antibiotics and haven't gone back on feeling gun shy. IV antibiotics have been suggested to me and I think it might be a good idea as I have more neurological and fatigue symptoms, which sometimes can respond better to IV than oral. However, if I have issues with methylation/detox (I also can't handle liposomal glutathione) I want to make sure I am addressing these deficiencies before or at least during antibiotic treatment.

My questions are:
1) With the homogenyous 677T mutation, a high B12 result (may be in normal range without supplementation), a normal Methylmalonic Acid and normal homocysteine, should one still be taking methylcolbalamin? Even with a normal methylmalonic acid test could one still be deficient or not absorbing B12?

2) Do you know if not being able to tolerate glutathione may indicate an issue with sulpher or allergy to?

3) How important do you think more comprehensive testing is for someone with these health issues?

Dr. Ben,
I was diagnosed positive for 2 copies of C677T Homozygous Mutation. The first year it was controlled with Deplin, first 7.5mg and then increasing to 15mg per day. My body built a resistance to the Deplin and I started having the same symptoms of severe abdominal pain and weight loss. My doctor switch to Metnax once a day. After 6 months was increased to two tablets daily one in am one in afternoon. About 6 months ago I started to loss weight again, slowly at first and then much quicker in the last 3 months. Also in the last year I have been diagnosed with ADD which I had never had before. I was an extremely type A personality that had everything in my life organized. Then I couldn’t even focus on one subject for more than a few minutes and would notice something else and move on before completing the first task.
A little about my background I have suffered from severe depression and insomnia since early childhood and developed unexplained anxiety in my late 20’s. At the age of 28 I was diagnosed with severe Fibromyalgia and due to CFS and incredible pain and weakness had to stop working. I am now disabled. At the onset of my diagnosis of Fibro I had what was called Leaky Gut Syndrome. This is and constant pain led to my diagnosis. I now know that it was a flare up of my gene deficiency. Somehow my body regulated itself on its own that time, but now I have Leaky Gut again and have lost so much weight that I am skin and bones. This is causing nerves to be pinched in-between bones and my pain has increased. In April I also started having severe Migraines so bad that I ended up in the hospital 3 times before a neurologist took me seriously. I am now receiving botox injections but they are only effective for short periods of time. I found a group of doctors who specialize in the deficiency, but have call and asked for test results and other forms of therapies with no response in between visits. Their therapies consist of drinking collustrum daily, taking a tbsp. of Coconut oil, vitamin B12 shots and increased amounts of vitamin D. I have been doing all of the above, plus forcing myself to eat (no appetite) non processed high quality foods that they recommended. All I can say is I feel worse than I did when I went to see them. I’m at a lose and don’t want to go back because I don’t feel that their communication is what it should be and because these therapies aren’t working.

I am hoping that maybe you can give me some advice and direction. If I lose any more weight I will be hospitalized. And my insurance refuses to pay for this new group of doctors. I can’t afford to keep trying new things with them because I live on a fixed income. Please help me! I have no where else to go!!!
Heather

ugg, Heather, when I read stories like yours, I come to think that my daughter’s health issues (which are significant) are small in comparison. I suppose you’ve also had thyroid, hormone and adrenal testing done?

Hello and thank you SO much for this incredible site. I am 37 and just learned i have the C677T mutation. Heterozygous. I see your water purifier you recommend. I want to do all i can to make all the best adjustments! We have a Kangan machine and have had one for 3 years. Is the machine you suggest similar to the Kangan? Or would you suggest getting a different one? Appreciate your help!

i was just diagnosed with homozygous mthfr c667t mutation. i have no idea where to begin. i found out because my ob tested me after 2 recent miscarriages ( i have had 1 heatlhy term pregnancy). i had homo cysteine levels drawn today and factor v. i am wanting to have more children. where do i begin with supplements? what other testing should i seek out?

Hello. Thank you for your extremely informational and helpful website!!! I have just been diagnosed as homozygous for a MTHFR mutation, after 3 miscarriages. I have always been very healthy (before the miscarriages), and strive to maintain a raw produce + protein (chicken, eggs, & fish) diet. Would starting with taking your Kids Optimal Multi (perhaps 8 capsules a day, instead of the recommended 6, as I plan on becoming pregnant soon) and then slowly adding 400 mcg of methyfolate as I’m able to handle it be good during pregnancy? I understand I’ll need to watch my symptoms and take electrolytes and glutathyione accordingly, as well. Thank you!

Hello dr. Ben, I am homozygous c677t and homozygous comt. Ive had a whole lot of issues ranging from depression to colitus tedulting in a proctocolectomy. I now have a j- pouch wich is forming sinuses and fistulas. I am concerned about these issues since I am only 28 & I have a 11 month old & a three year old (with autism and digestive issues) Is it safe to take all of these nutrients/supplements while breastfeeding? I know some of them are but im not sure mainly about the tumeric/liver support/neutralize/and flow. Also thanks so much for everything… you helped my nd with a treatment plan for my 3 year old and while he is not 100% he is so so much better so thanks for everything you do.

Hello Dr. Lynch,
I am homozygous C677T – I don’t know about the A version, as my doctor will not test for it. I ordered your supplements including Turmeric, Vitamin D Oil, Optimal Multi, and B12 with L5MTHF. I was taking the B12 and felt fine (Now I know I skipped the Active B12, so I am correcting that.) When I added the vitamin, I noticed a headache would set in within an hour or so. When I figured out that I was taking the wrong B12 (after 4-5 days of taking it), I stopped and continued taking the vitamin, but I only took 2 and still got the headache. Can you tell me what you think I should do? I eat a very clean AIP diet (6 months) and I take probiotics, Iron, glutathione, and chaste tree. I’m confused about why the B12 L5MTHF made feel so great until I added the vitamin. Thank you for what you do. You give me hope that I may eventually get this right and feel like a normal person again.

Dr Lynch: I posted updated info on TESTING but also wanted to inform you. 23andMe and MTHFRSupport have 34 pages!!!! of +/+ +/- & -/- with 11 out of I think you said 20 MTHFR markers and 8 pages of (over my head) how everything works. For $138 total, people that say can’t afford need to beg, borry or save to get this LIFE changing info. I wish I had the money to form a GRANT for testing. Anyway I am C677T +/- and A1298C-/-. Even though I have 1 marker, I discovered a life changing clue!!!! I suffer, all my life, from MAJOR anxiety!!! I can’t take anti-depression meds and have med intolerance, like some BRANDS work or I don’t need nowhere the dose or it stays in my system to long!!!! I have been on some kind of BENZO for 30 years with off for 3 months. TESTING SHOWED I CAN’T PRODUCE GABA!!!!! Out of 10 markers for “Glutemate & GABA” 5 are +/+ 2 are +/-!!!! Unreal!!!! No GABA was causing HR and BP problem.
QUESTIONS: I am seeing a ND with your training. She is doing to big apporach, like you said, to MTHFR. I had stopped ALL vit. waiting for testing results. She started me on 2 veg. B vit. with 800mg of folate. Also I took SAMe for a week and BOTH fired up my “tinnitus” in left ear. What could cause this? Since SAMe is “CEO of the body” am I going to have to suffer with this MAJOR problem?
You do your research because you have both MTHFR mutations, how would I go about researching my GABA problem? You state A1298C, mind is find but A1297C is +/+!!! Do they effect each other or totaly seperate? Thanks for your time. FMC NOTE: I have started leafy greens and have noticed neuropathy, that I talked about, is getting better!!

@ Fred C – I am MTHFR C677T +/+. I also did 23andme and ran it thru Sterling’s MTHFRSupport but cannot access my report details online as the site is updating. I Can you please list the exact the names of the genes for both GABA and GLUTAMATE markers so I can see what mutations I may have also? Would very much appreciate!

Hi Dr Ben, I have recently been diagnosed as homozygous C677 and was initially happy to have finally found the cause of some of my health issues (lifelong frequent infections, migraines, IBS, gluten intolerance, cystic acne, homocysteine currently 15) but quickly became very overwhelmed at how to take care of myself and my family (my daughter and husband are both compound heterozygous). Our doc started us on 2000 mcg of methylfolate (my 9 yr old on 1000mcg), but said our B12 levels looked fine so didn’t advise anything other than methylfolate. At first I felt like the fog was lifted and I could think again for the first time in years. After reading your site I realized that we should probably still add in some B12, but every time I take even 100 mcg I get a headache and heart palpitations. I had an episode last year where I passed out and was rushed to the ER and they said I seemed fine other than low potassium. I have had 2 more episodes like then since, but didn’t go to the ER. I don’t know if these episodes are related, but I thought I should mention them as well. I could really use a little advise regarding what we should do next. I read to try the hydroxocobalamin, but should I do this instead of or in addition to the methylB12? Also, is B12 necessary for all MTHFR people? Any suggestions on what we should try next? I would really appreciate any advice as I am having a hard time sifting through all of this myself and I am feeling pressure to come to some sort of protocol to help my daughter not follow in my footsteps (health wise).

Thank you, thank you, thank you for your research and your supplements.

I was tested for the MTHFR mutation in between having my 2 girls. I am compound heterozygous for 677 and 1298. Back then, there was not as much information available online, including your website. My doctors promptly put me on baby aspirin and Folbic throughout the pregnancy with my 2nd child. They were more worried about clotting than any folate or B12 deficiency. While I was ecstatic to carry her to term after repeated miscarriages, I felt horrible physically from taking the Folbic. I felt nauseated, tired, run down, and even developed anemia by the end of the pregnancy. My doctors told me that I didn’t have to worry about the MTHFR unless I was trying to conceive again. So I believed them.

In the years that followed, I was constantly tired, but I thought it was just having 2 young children. But I noticed I did not feel better after they got older and I was getting plenty of sleep. I started researching about MTHFR as I had read what types of illnesses it was linked to. I came across your website and read through many of your relevant posts. I also watched an online presentation by Dr. Neil Rawlins. Finally, I realized my folic acid supplements were not helping, but actually making me feel worse.

I recently ordered your Active B12 with L Methylfolate lozenges, and it is changing my life. Thank you so, so much!!

Hi Ben Lynch,
I am so frustrated, I sent in a 23andme test awhile ago and they could not pull sufficient levels of DNA from my saliva sample, so they sent me another one, and again, no DNA!
I am convinced I have a MTHFR mutation since after reading, researching, studying, and finding your website. ALL of my symptoms have to do with the mutation. I have low thyroid, very irregular menstrual cycles, a messed up gut, depression, anxiety, some breaking out happening due to toxic buildup and ALL of my neurotransmitters and down the shoot. I want to believe it is safe to go ahead and try at least one of the simplest protocols that can apply to both if not all mutations.
Do you suggest I go ahead and follow one of the protocols for a homozygous c667T MTHFR protocol? I went ahead and bought (Solgar) 1000 mcg methylcobalamin, 50 mg P-5-P, 600mg NAC and I have a 800 mcg of methyfolate, but going to cut into 1/4 and start next week to see how I feel after methycobalamin.
Any suggestions, concerns or comments would be so appreciated. I am so TIRED and sick of being in the dark and doing all this on my own at 22. And no one is listening to me.

If homo cysteine level is low and I’m feeling pretty decent–no major complaints, should I still work up to taking HomocysteX? I am homozygous for 677 and have been working on my health for as long as I can remember. I’m in a good place, getting thyroid optimal and adrenals are finally doing their job. Do all homozygous patients need the NAC and TMG and other elements found in HomocysteX? Or will it suffice to stick with B12 5000 and Methylfolate? Thank you so much for your work and for your response.

I have found in my research of MTHFR mutation that those who have the homozygous mutation have toxic levels of P5P. This may also have a correlation with the fact that the same subjects have also been diagnosed with autoimmune hypothyroidism. I would recommend before taking any supplementation that insufficiency is first established.

I was diagnosed with Homozygous C677T about 2 1/2 years ago shortly after a stroke. A nurse practitioner in neurology who was treating me for migraines saw a connection between all my ailments including diabetes, fibromyalgia, the stroke, anemia and so on. So she tested me. She didn’t know much about it so she prescribed Deplin 7mg. Over time I cut it down to 3.5mg. The first amount made my sugars shoot up and I couldn’t get them back down. I was already taking NAC, Alpha Lipoic Acid, fish oil, etc. my question is how should I proceed now? Should I back everything down and start at the beginning with your protocol? Also, is there a list of other tests that I should get?
I very much appreciate all the work you done and information you provide. At first it’s wa very difficult for to read and retain. That has gotten better. Thank God!

Eating to 80% satiety is important – and so is stress reduction – VERY important.

High methylfolate levels tend to INCREASE stress and anxiety in many people.

Liposomal vitamin C seems to support a number of people with blood sugar imbalances. I am not sure of the connection entirely but it seems to work quite effectively for two individuals I know personally.

What should our B12/Folate lab results look like? After several months on 5mg Lithium orotate my b12 results are still very HIGH (B12 1838 range 211-946, folate 16.5, range >3.0). I’ve been taking your active B12 lozenge and not sure if it is what is causing insomnia so I’ve stopped to see if it continues. I’ve taken 5-MTHF without negative results but only in low doses (130mcg.) or so. Thank you very much for your response!

Hi Dr.Ben,
I just found out that my severely autistic son has a positive result for two copies of the C677T mutation. He is non verbal and has many health problems that seem to be getting more complicated over the years, with the doctors who are only treating the symptoms with more drugs. He has GERD, a Brain lesion, Gilbert syndrome, Raynaud’s disease and now he has chronic strep A infections which always starts with OCD like behavior. The doctor who treats him really does not know what to do and said they have no experience in treating this or what to do to help him. I recently sent in his 23andME test but still waiting for the results, could you please help me to help my son. BTW, he did develop normal until 18 month shots when he had a febrile seizure and lost his speech and was later diagnosed as severely autistic.

I am heterozygous for the C677T mutation. I am confused about what supplements I need to by taking? I have hypothyroidism and fibromyalgia, so I have quite a few symptoms going on. I have cut out diary, gluten, and most meats (being that I am also type A blood). Do I only need to be taking the multivitamin?

Dr. ben, I have MTHFR, they said heterogeneous for C677T and A1298C. They told me to take B6, B12 and folic acid everyday. After talking to some people however I am not sure I’m taking the right supplements. Could you advice me on what to take.

The information in this article is also useful – start with lifestyle/diet/environment FIRST – then add in supplementation after you’ve addressed those. Many symptoms may improve a lot if the diet/lifestyle/environment is improved.

Thanks so much for the link it was very informative. I have been having a lot of issues from brain foggiest to severe stomach issues. I have just started a gluten free diet which is helping the stomach. My doctor when diagnosed in 2010 had me start taking the B6, B12, and folic acid regime everyday. I am now thinking from watching the presentation that that may not be my best course of action as the folic acid may be the wrong form and making me feel worse. How would you suggest I take supplements

I am 20 years old and have dealt with psychological issues (social anxiety, depression, etc.) my whole life that can all be caused by dopamine and serotonin imbalances. I never tried to fix those issues until recently, however. I started by trying to raise my dopamine and serotonin with the following supplements:

This protocol had no effect on my mood whatsoever after a few weeks, even if i boosted the tryptophan and tyrosine dosage, so I decided to do some research and came across your website. After watching video lectures multiple times, reading articles, and looking into my family history of heart disease, miscarriages, breast (and others) cancer, endometriosis, etc. I suspected a compound heterozygous MTHFR mutation. I got tested and thats exactly what I had, so I started a new protocol, treating myself as best as I could to reflect how you would treat me:

Sundown 5 mg SL Methylcobalamin daily shortly after a meal
Omega 3 Fish oil from Madre Labs daily
Doctor’s Best Best Multiple multivitamin 1/3 dose daily
1 week later I added:
100 mg P-5-P from Life Extension twice daily on an empty stomach
1 mg Life Extension Methylfolate that quickly elevated to 15 mg daily due to no noticeable effects. Once that ran out I got methyl Life’s 15 mg Methylfolate to take daily on an empty stomach
Shortly after I added 50 mg Zinc Picolinate from NOW FOODS daily on an empty stomach,
200 mg Magnesium Glycinate from KAL 4 times daily on an empty stomach, and
800 IU vitamin D3 from GNC daily

I’ve been on 15 mg methylfolate for a month with no psychological or physical effects, whether adverse or beneficial. Where do I go from here? Is this normal? Am I just being impatient? Could I have intestinal absorption issues? I have had intestinal issues in the past that were quickly remedied by eating some yogurt for probiotics. I also have a super high metabolism, being able to eat whatever (not that I do, I try and eat as healthy as a broke college kid can) and however much i want without gaining a single pound even though I’m only moderately active, if that indicates anything about possible digestion issues. I also tested my testosterone levels 5 months ago which revealed my T levels were only at 335 ng/dL. I got tested again a month later for testosterone along with some others:

Total T: 434 ng/dL
Free T: 70 pg/mL
Estradiol: 32 pg/mL
and the endocrinologist just said my pituitary, prolactin, and thyroid was all normal, but he also said the above hormone levels were normal too, which I disagree with. Even if they are considered normal, they are far from ideal for a 20-year-old fit male. Is the MTHFR mutation linked to low T?

Is there any kind of advice you can give me so I can figure out and fix whatever it is that’s wrong with me?

Dear Ben, I decided to check in with you its been about four months since my last comment. Ive been in and out of the neurologist, an EEG, EMG, and a lot more tests were done as well as an MRI of my head to try and figure out why past two or so months I was having severe migrains that consistently felt like my head was being smashed at and a different type of brain freeze pain feeling in my head it was most of the time happening in the right side of my head. At age of ten or 11 I had got my head smashed on pavement where my right temple is. I had read that too much b12 could cause headaches so I had stopped it and seen if it had an impact. Past teo or so weeks the headaches have been better but I still get confusion often and “spells” of disociation such as lot of trouble with memory it has even impacted spelling at times and feels like cognitive misfunctions. S
Mood changes have been intolerable most days. Havent given up hope but I know theres a imbalance going on I just dont know where to start when the tests they did appeared to be “normal” and even memory tests were done and she said It was major depression but why severe memory issues? Its sad how so many people still dont know about this mutation and how crucial it is. How can my test appear normal but my body and mind scream error and fear. One’s self knows when something in one’s body is not right I believe that to be true. I get pains everywhere. Feels tight in face and muscles and pain but also crawly spasm pains, tingles of such. I get pains in my organs often such as kidneys and other areas. Lung area hurts comes n goes the test eeg I believe it is that wires to the head doctor said appeared normal besides what seemed to be a slowing in the back of my head and said a longer study of it would show if it was an actual issue or just out of being sleepy at the time. My depression past few weeks has peaked so high and I wont take mood stabilizers or anti depressants those always made me feel worse and magnifief traumatic/difficult emotions. I did get a call yesterday from neurological clinic and im wondering what theyll say about the recent new tests that were ordered. I still havent foubd a doctor who cares about my mutation or to research it to try to help me really. When I can im wanting to gather as much information about MTHFR and C677T and its components as possible such as your research and make a portfolio and hoping to pass it along to as many people and or doctors as I can with my research, yours and other findings. Lot more medical symptoms going on but ill save that for when I hear about results. I think these too will appear “normal” so then I really dont know what road to take next. Ive seen some new additions to your site I havent gotten to read much of it yet. Hope you are well and like always, you have my prayer and support in your research and findings. At some point I want to do 23 and me but the site said it doesnt do medical portion anymor and im not sure if its still like that. Thanks for reading our comments ben, a lot of us really appropriate your determination and dedication to medicine and well being of others. Until next time, God bless Dr. Ben.

Hi Dr Lynch,
Curious why you say use electric over gas stoves? I just switched my electric range and had a propane tank delivered bc electric ranges give off a HUGE amount of dirty electricity right at the waistline/organs and for a substantial amount of time spent cooking. I measured it with a Trifield meter and it is not healthy at all to be so close to a source of electricity for extended periods of time.

I have always used gas. The only time in my life I used an electric stove was when my husband and I bought our first house. It was equipped with electric and within a few months of using this stove I become very ill and developed leaky gut syndrome. We have it switched and within a few months I started to feel better. I swear never again to use electric. When cooking I rarely stand in front of the stove for more than a few minutes to stir or flip whatever I’m cooking. I have a hard time believing that the connection to electric has that big of an affect on our condition. What concerns me more is the microwave. I try to never stand anywhere near after I start it. And our new house has the microwave above the oven which makes me feel even better. Probably no connection between the microwave either, but if my mind feels better than so does my body. I totally believe in psychosymatic conditions. Any one else out there feel the same?

I dont see my comment I posted yesterday but anyways, found out today that some tests I was awaiting from neurological clinic “normal” I just now realized in my comment I tried to post yesterday I didnt tell u again what my mutation is, likely not to remember me telling a year or more ago or when it was. Anyways, I am Homozygous for C677T. The pains most days are unbearable. The headaches are coming back. Ihave done so much to try and help myself I dont know what step to take feom here since I have seen over 5 primary type doctors, ive seen a hematologist, ive been to two “specialists” at mayo clinic last year n they didnt know anything about my mutation,most recently seen neurologist, and past 3 years since my saddle pulnonary emboli, due to my blood disorder I have been into the ER countless times to where I couldnt guess how many times. I feel like a broken doll. I have tried a while ago the list of doctors that u said off website who have taken ur course, one was booked so far out and the rest were far away and the doctors ive seen wont make an emergency referral for me.to get into one of ur course doctors sooner rather than later. Im at the end of my rope. I cant handle much more of it. The dizziness, spells, memory loss, poor attention span, pains in extremities n limbs that make sleeping hard. Chest pains, shortness of breathe, severe migraines, most of the time im lucky if I can remember.to take my blood thinners ive many times missed doses because I forget to take them as well as most of the time.forget conversations I have with people, times often where I feel lost in thought as if im blacked out and at that time is I get confused anddissociated with surrounding things. Theres more but ill end here for now. I just want help, im 23, my life has been miserable due to these issues. I dont want to lose hope but I feel like I am. Please dr ben help guide me with something to help me with on what options I have left and anymore resources and suggestions so I can try and get better. I cant live my life like this anymore. Its going to kill me ine day if not medically than by stress.

Dr.Ben,
I have recently tested pos for MTHFR C677t (hetero) and will be starting on your protocol. I previously have tested positive for Factor V Leiden (hetero) so I am somewhat concerned about the cardiovascular (particularly clotting) issues with both mutations combined. Are you familiar with any research or further supplementations I should consider to decrease my clotting tendencies, or will simply following your protocol help to reduce my risk? I already eat a pretty healthy diet with a focus on lots of fruits and vegetables/leafy greens. BTW, I am in grad school, studying to become a Certified Nurse Midwife and I am amazed at the far reaching impact of this mutation that I really I had no idea existed until a few weeks ago when my sister tested positive. (I have been a labor and delivery nurse for 25 years!) I watched your video and plan to continue my education on all this so I can help my future patients and their unborn babies! I agree with you that this is VERY important information to get into the mainstream healthcare system! Thank you for all you are doing to educate the public on this information. Laurie

I am confused about the recommendation of avoiding folic acid. I understand that someone who already has cancer should avoid Folic Acid since cancer divides rapidly and needs to make new DNA, hence Folic Acid actually helps cancer cells accomplish this…Further there was a study involving people with MTHFR comparing folic acid and methyltetrahydrofolate to lower homocysteine levels. The study showed that though folks with MTHFR were able to use Folic acid to reduce homocystine. http://ajcn.nutrition.org/content/75/2/275.long. Can you point me to journal citations?

I have started taking supplements with Activated B vitamins (with 5-methyltetrahydrofolate) and have avoided most wheat products for almost 20 years. It is probably why I have not become severely symptomatic before discovering I was homozygous for C677T…other than continued high blood pressure and cholesterol. Prior to my change in diet 20 years ago. I had several children with birth defects…the last did not survive past his first birthday. I have also seen benefit in the supplementaion. My blood pressure seems to be trending down…but I still have the nagging question of WHY is Folic Acid bad, albeit poorly absirbed?

Synthetic folic acid does not exist in the human body. It is found in vitamins, and thanks to the FDA’s wisdom, in enriched flour-based foods (yet another reason to shun flour!). Multiple enzymatic steps are necessary to convert folic acid into its active form beginning with dihydrofolate reductase in the gut. Individuals with gene variants, but specifically homozygous C677 should avoid folic acid because of the concern for limited breakdown and subsequent accumulation of this man-made agent. One study has implicated folic acid in suppression of important immune factors called natural killer cells. Folic acid binds more readily to receptors in the placenta and mammary epithelium, and may competitively inhibit or interfere with the functionv of usable, active folate. Currently, commercial testing of blood folate does not distinguish between metabolized and unmetabolized forms. There is also concern that folic acid supplementation can mask B12 deficiency by resolving the typical blood markers while methylfolate is not as likely to do this (although concurrent B12 supplementation is recommended).

It is incorrect to say folic acid is poorly absorbed. It is reputed to be absorbed better than MTHF. The contention is that those with the 677 MTHFR polymorphisms have a greatly hampered ability to metabolize it because of reduced ability to make the MTHFR enzyme, which is one of the steps needed to convert folic acid to the active form of folate used by the body. You can read comments on this website that disagree with that contention.

This is the summary of the research article you linked to: “In summary, this randomized, double-blind, placebo-controlled study showed that the reduction in plasma tHcy concentration by FA or MTHF supplementation is influenced by a person’s MTHFR genotype. Subjects with the TT genotype may be able to compensate for the effects of the 677C→T mutation on homocysteine and folate metabolism if their folate status is adequate, eg, after intake of FA or MTHF.”

This study cannot be used to support any benefit of folic over MTHF or vice versa. Most unfortunately, the research used a racemic form of MTHF, so only half of the MTHF dose was of a biologically active form. Essentially the research compared the equivalent of half a dose of MTHF to a full dose of folic acid. The authors note this issue, and I think it really compromises what could have been a direct comparison between folic acid and MTHF in subjects stratified for MTHFR genotype.

Some conclusions can still be reached. First of all, in comparing the half dose of biologically active equivalent of MTHF to full dose FA, those subjects getting FA did not appear to be disadvantaged in any way compared to their baseline levels, with one exception. All of the subjects getting FA had lower homocysteine and higher folate levels at 8 weeks of daily supplementation than at baseline. The exception is that, in looking at 677C->T MTHFR subjects, the only group to be analyzed for distribution of folate metabolites, those getting FA had 1% unmetabolized folic acid after 8 weeks, whereas those taking MTHF had no unmetabolized folic acid. I don’t know how much impact this 1% UMFA would have.

Subjects getting FA as well as those getting the equivalent half dose of MTHF had the same increase (163%,160%) in RBC folate after 8 weeks. For some reason those given the placebo had an increase of 123% in RBC folate after 8 weeks, whereas their plasma folate had declined to only 90% of baseline. The authors unexpectedly found considerable differences in plasma folate versus RBC folate measurements for all groups, but that difference was very marked in the group given MTHF. This may say something about inaccuracy of a plasma folate test.

Regarding the homocysteine arm of the research. The placebo group had an increase in plasma tHcy from baseline to 8 weeks. The tHcy of the TT 677 group dropped in the first 4 weeks when given either folic acid or MTHF, and then increased some from 4 to 8 weeks. It’s like they didn’t have enough folate to sustain the drop in homocysteine.

This research was further hampered by the very small group of TT MTHFR 677 subjects. This limited the ability to declare changes seen as being statistically significant.

I lost my daughter almost five months ago to a neural tubal defect. I have one healthy son who is almost two. I had zero complications with either pregnancy. After a blood test I found out that I do have two mutations (C677T and A1298C), but my homocysteine was 4.1. This test was done when I was about six months pregnant. They prescribed Folgard, but after much reading I stopped taking it because everything says I should not be taking Folic Acid. I am taking a prenatal with methyl folate (made by the Honest Company) and I started taking Optimized Folate, 1000mcg, 3-4 times a day. I am very concerned as we are thinking of trying for another baby in the next few months. I have zero symptoms of this mutation and none of these pills have any effects either. I also try to eat a lot of veggies with natural folate. Can you recommend which vitamins I should take? It seems all doctors know is that following an NTD they recommend 10 times the amount of Folic Acid.

You mentioned “In order to use folate, you need to have adequate B12”. What if you are taking Methly-B12, do you need to take Folate? I’m MTRR, not MTHFR. I’ve had my folate levels tested in the past, and no one could tell me whether it was high or not because there was no range by the lab. Strange. I do remember the number 19. Anyway, does Methly-B12 require ample Folate to work together? I’m assuming not, if I remember correctly that MTHFR usually donates a methly group to B12, but if I’m taking Methly-B12 then that process isn’t needed. Anyway, just thought I’d ask.

I’m now taking Seeking Health’s Active B12 which has 5000mcg of Active B12, (4000mcg of Methly and 1000mcg of Aden…)

Thank you for the links. I’m still a bit confused about Methly Trapping in regards to my protocol. I have MTRR ++. But MTHFR is fine. So, I take Methylcobalamin. In fact, I’m taking Seeking Health’s Active B12 now, which has 4000mcg of Methylcobalamin and 1000mcg of Adenosylcobalamin. It seemed that when I switched from dry caps (1500mcg each) to the higher dose sublingual, I started feeling even better.

So, my question is, since I’m already taking Methylcobalamin, do I still need Methyl-Folate? For me, since I have MTRR and can’t make Methyl-B12, I need to supplement with Methyl-B12, so I don’t need Methyl-Folate to lend a methyl donor to Cyanocobalamin to make Methylcobalamin. But then what happens to my folate? Or, if I were to take Methyl-Folate, what would that do for me since it can’t really help with my B12 situation…

Being MTRR ++, does that mean I can’t convert Cyanocobalamin or Hydroxocobalamin? If I could, then taking Hydroxocobalamin would probably allow Methyl-Folate to lend a methyl-donor and help it convert, then Folate can complete it’s cycle. But, not sure I notice much diference while taking Hydroxocobalamin. And if I can’t convert Hydroxocobalamin then there’s probably no point in taking it.

Do my thoughts make any sense? I sure could use some clairification from anyone who had a better understanding of Methylation.

I am hoping for a little insight. I have both of these gene mutations. I have no symptoms, other than my daughter died when she was born because of a NTD, which is why I was tested. I also have a healthy 2 year old. I am trying to figure out what type of supplements to take. My doc prescribed Folgard which is basically Folic acid. I stopped taking it over two months ago after reading over and over extra Folic Acid is not the answer. I switched to taking 3-4 1000mcg of Optimized Folate plus a prenatal with methyl folate. It has been recommended to take 10 times the amount for several months before conceiving. I guess I am wondering what to take and how much? It seems they recommend such a high dose because it’s not metabolized well, but if you take something that it, does it need to be such a high dose? I know you may not have an answer or advice, but maybe could offer something? I’ve looked through the website, but it really overwhelms me. Thank you in advance.

Hi. My name is Angela, I am 45, wht fml. I was diagnosed with a double homozygous mutation after two brain strokes. I have had lupus flares for years without positive tests for lupus. My flare ups are still out of control. I have been on prednisone now for 7 months straight. I have severe stomach issues. Severe constipation and when I cannot use the restroom, I feel my body is being poisoned. Since my stroke, I developed chronic auras that effect me daily but am treated with nurotin/ zanax. They are close to almost a seizure type of aura. I have been diagnosed with anxiety, depression, muscular skeletal, lupus, ADHD, severe constipation, migraine with auras, and the list goes on. I Live in the Upper Peninsula of Michigan, there is not one dr. Who knows about MTHFR double homozygous or how to help me. I feel like I am losing my life, I’m so sick all the time. I have a son whom is Autistic and is 10. He is my whole world. I just want to get better for him. No one here understands or can help me. My first mission is getting there horrible flare ups to stop. I have severe allergies. I feel lime giving up. I just want to feel good enough to live. I so desperately wish there was a dr. Here who would at least care to research. I feel confused about everything. Any help would be so greatly appreciated. Sending Love to those also inflicted with this.

I too am double homozygous and have a 9 year old daughter. I am trying to sort all of this out too, but I thought I would at least pass on some things that have helped me. I am not a doc or a health professional, but these things have helped me out. For constipation, I stay away from dairy. I take Magnesium every evening and upon waking drink a tall glass of water with a freshly squeezed lemon added and 3,000 mg of Vitamin C. Weekly I do a coffee enema to help cleanse. I take 2000 mcg of methyl folate every morning and I am currently on Fetzima for the depression. Staying away from dairy, gluten and processed foods helps a lot with the migraines. For my daughter who has ADD tendencies and is compound heterozygous, I keep her gluten dairy free, give her 1000 mcg of methylfolate and lots of fish oil. We also take lots of probiotics and drink kombucha. I hope this helps and if anyone has anything to add I would really appreciate any tips too.

Hello
I have just found out that I have the c677t mutation and thank God I found this website. My Dr. prescribed me Levcovorin 10 mg and I wanted to know if this is a good medicine to take? I also have low Vit D for the third time testing and my second time taking 1.25mg (50,000 unit ) 2 a day for 4 days. Is my Vit D being low have anything to do with this c677t mutation?
Thank You

Hello Dr. Lynch, – My friend in Costa Rica was diagnosed with the C677T MTHFR homozygote mutation and I am trying to send her as much info about that disease as possible. I like your website and the information you are providing for people with the C677T MTHFR homozygous mutation issue, but there are some conflicting info I would like you to clarify for me. Many doctors prescribe Foilc Acid supplements, specially L-5-MTHF, for the patients with MTHFR homozygote. Will you be so kind and clarify this issue for me why in your website you say that the Foilc Acid need to be avoid?
Best regards,
Andreandret@asheainc.com

Just found out through Spectracell testing that I am heterozygous C677T. Also borderline deficient in pantothenate, carnitine, spectrox, immunidex. Other testing shows deficient in iodine. Also have a connective tissue disorder.

Also recently diagnosed with small fiber neuropathy and my neurologist wants me on some medical food which I have been hesitant about beginning because I was suspecting MTHFR so did the testing on my own. I was given a choice between two different medical foods which contain the following ingredients and I’m not sure if this is something I should even be taking being MTHFR heterozygous C677T.

Although I can’t recommend you take one or the other, either one just based on the ingredients you list seem fine to take. If I were in your shoes, I would look again at the Basic Protocol, compare Dr. Ben’s and your neurologist’s recommendations, have a discussion with your neurologist, and try option #1 or #2 for a period of time. You have to consider dose, quality of the supplement, and pay attention to how you feel.

New to the MTHFR breakthrough in genetics!
Daughter 15 years old with suspected PCOS (hi testosterone readings), I insisted that we go to Hematologist and we learned she was positive for Compound Heterozygous mutation (A1298C & 677c). My side of family is the only known medical history (Stroke, viral pericarditis, some macular degeneration in past, mental health issues, psoriasis, circulatory issues, varicosities, hypertension, hypothyroidism, miscarriage). Her Endo wants to put her on Birth Control Pills to treat the PCOS (NO heavy periods; cramping and moodiness). What should I tell my daughter & her Endo???
(I had used barrier method when young due to being told BCP would elevate varicosities & risk of stroke, I likely had elevated testosterone/PCOS as well). Moving forward, how should we treat her PCOS given her current Compound Heterozygous diagnosis?? I’m dragging my feet on the BCP issue since I so love her and I’m torn by the above.

Based on my personal experience, I would not recommend putting your daughter on the BCP. I am compound heterozygous as well. My doctor put me on the BCP, and my blood pressure went way up. I was athletic, healthy, and had low BP readings before being put on the pill. As soon as I stopped taking the pill, my BP went back down. The clotting risk of the pill is amplified by MTHFR defects, and the pill will also decrease folate levels. In my case, I also have Factor V Leiden, which made things worse. I also had a lot more colds and infections while on the pill.

If you search Dr. Lynch’s website, you will see comments he has made about treating PCOS without the pill.

Dr. Lynch,
I am just a bit confused by your protocol – it is probably quite clear to most. I am compound with a one copy of 677C and one of A1298C. I have had much difficulty with this whole supplementing but it it getting better. I met with an NP from your resource site. He says my B12 is fine at the 700 range so I do not need to take that with the methlyfolate. Now he also suggested 400 mcg. each day and the SamE as a way to stop any over methylation. He did add in some other supplements that I ‘go into to. I am going to go ahead and try it but wonder what your thoughts are on it.

I have been diagnosed, approximately 1 1/2 years ago, with MTHFR mutation with the 677TT version. My physician informed me that this was a severe disorder and to take it seriously. She at that time, ordered deplin 15mg daily. I saw that you do not recommend this medication. Can you enlighten me on the reasoning for that, and other possible medications that I could talk to my physician about?

Hi Cher – Good to hear that your physician is taking the MTHFR mutation seriously. Without other information, it’s hard to say exactly why your doctor chose deplin 15mg daily for you. There are a few reasons why Dr. Ben does not typically recommend Deplin: 1) Jumping to a 15mg dose can increase the likelihood that someone with a MTHFR mutation will experience significant side effects. 2) Supplementing L-methylfolate alone (in this case, Deplin) may mask a B12 deficiency. 3) The pharmaceutical versions L-methylfolate often contain dyes, preservatives, and other artificial ingredients.

Hi Marilyn – All Seeking Health products go above and beyond minimum quality standards. Please see this page for more information: http://www.seekinghealth.com/quality. Certificates of Analysis for specific products are available upon request. The Customer Service team is available to answer any questions you might have about product quality.

Hi Dr. Ben! I just found out yesterday that I have copies for both C677T/A1298C. I am also high in niacin. What can I use instead of niacin to prepare for methylation? Also, are all the doctors listed on your site following the same template that you recommend, or are they simply educated on MTHFR? Thank you so much for your help/advice! Rachel

My son is hetero at 677. We eliminated his B complex when I realized it was doing harm instead of helping. He shows B deficiencies in his NutrEval tests. We have to have liquid supplements. Do you have any recommendations for liquid? I’ve avoided starting this process.

Can the protocol for heterogenous C677t be followed if I’m compounded a1298a>c? I am currently experiencing facial numbness and other nuerological symptoms that I’ve never felt before. I’m also on seizure medication called Trileptal. I will be visiting my neurologist ASAP, however I was also wondering if a B12 or folate deficiency can cause facial and brain numbness feeling.

Thank you so much for doing what you do! Your research is helping so many people, including myself. I suffered from recurrent miscarriages before being diagnosed with MTHFR (homozygous 677), & your hard work helped me figure out how to treat my condition to have a successful pregnancy.

My question, though, is for my 5-year-old son. Your protocol talks about how to supplement for adults, but how do you proceed in supplementing for a child? My son is having behavior issues that I want to address using nutrition, & a naturopath helped us diagnose him with poor digestion & low minerals. Unfortunately she knows almost nothing about MTHFR. Should he start with methylcobalamin first to prevent methyl trapping if he is only heterozygous? How does the amount differ for a child compared to your protocol for adults above? I don’t want to start a bunch of supplements that he can’t handle because his methylation is off, so I want to address that, but I’m not sure how. Should’t that be addressed first, or can I start him right away on the multivitamin chewable (which contains methylcobalamin & methylfolate)?

Any general advice on how to proceed would be so helpful. He has ADHD symptoms that are becoming more distressing for him & our entire family, but I am strongly against prescription medications without addressing his nutritional/methylation needs first.

This is just blowing me away. I did a research study about five years ago and found out I had a 677t defect on the MTHFR. I didn’t think much more about it. Until I had my saddle embolism that had me helicoptered to a heart hospital for 3 days Lytic therapy. My family has at least 5 generations with DVTs, but no embolisms until me. My Mom had DVTs every year or two for 50 years. Her grandfather had died on the operating room table in 1940 when they stripped the vein and the clot broke loose, went to his heart and killed him. Started looking in to the MTHFR problems just recently and was shocked. I have fibromyalgia, CFS, IBS, neuropathy in my feet (no diabetes), GAD and depression. Looking at some sites, finding out that these are signs of the problems with MTHFR defects. I am on SSD now for 5 years, because I can no longer work because these symptoms were so bad. So I am really shocked by the info I am finding. I did Gluten free for over a year, and didn’t notice any improvements. I stopped all artificial sweeteners, all soda, all HFCS, almost all sugars. I started a K free multivitamin a month ago, which does have folate in it. and I do feel better. I’m just amazed at all these problems I have that could all be connected to the MTHFR. wow.

I am homozygous MTHFR C677-T with low S and C proteins, my doc told me to avoid Motrin, but I heard Tylenol is bad for children with autism (my child must have 1 allele of the defect if I’m homozygous).
What should we take for a bad fever?

Hi Momma Texas – More often than not, a fever does not need to be medicated–it can actually be counter-productive. Fevers are a normal and beneficial response to an infection, and not a great indicator of the severity of the illness. A child might have a high fever but still be happy and active (probably doesn’t need to take anything for the fever). Another child might have a lower fever but look pale, very restless, and lethargic–this child probably needs medical attention. Fevers can be a sign of a vital and effective immune response…why would we want to shut this process down?

that article made my head spin…overwhelming information, comprehensive definitely but wow just so overwhelming. Doctors don’t mention any of this, they act like it almost won’t have any impact on your life…

I am 31 years old and I feel 90. I found out I am homozygous c677t. I went to a specialist in Ohio that took your training and was not prepared to pay the $13,500 price tag for his program. I was beyond excited to finally find a doctor to fix me. When I saw the price, I was immediately depressed and felt helpless. I will now be trying to self medicate using your directions as I feel this is my last hope. I want to thank you immensely for taking your valuable time and posting this.

I just ordered every single item from your Phase 1 on Amazon. It came to $300, which is a bit more manageable than 13k. I am wondering how I begin? Do I take all the Phase 1 supplements the day of according to directions? And also, if I am successful with this, when I begin Phase 2, do I take all of those supplements as well?

This is literally my last resort. I have been to endless different doctors whom all havery made me feel as if I’m just some hypochondriac. I am 5’5″ 125 lbs and I work out 3-4 times a week doing weightlifting and yoga. I am constantly sore and I eat processed foods maybe once a month. I cook my foods (mostly organic) at home. I am incredibly ADHD, have been diagnosed with fibromyalgia, chronic fatigue, panic disorder, anxiety, depression, arthritis (at 31), bicep tendonitis, spondylosis, cervical rediculopathy, knots everywhere in my neck and shoulders that no chiropractor/physical therapist/masseuse can rid and I’m about positive I’m missing a few things. I have 3 young boys that require me to function and I feel helpless.

I had pre-eclampsia with my twins and was forced to deliver at 35 weeks. My third child I carried to term and he was a very healthy 9 and a half lbs. Two of the three have been diagnosed with ADHD. One has a para-sacral dimple (closed) and my third child was diagnosed with a neural tube defect for the quad screen. Thank God I ignored the test, as he was born perfectly healthy. I am curious if the quad screen came back as positive since I carry this mutation? I pray that mother’s ignore this test and carry out their pregnancies regardless as my baby came out fine.

As for my family background, my maternal grandfather died of a heart attack at 64, grandmother of emphysema at 72, maternal uncle died at 58 of a “floating blood clot,” maternal aunt passed away at 60 of brain cancer, there are anxiety and depression issues with many on the maternal side and my sister suffers from seizures. On my paternal side are strokes and thyroid cancer. I want to live longer than this and I’m hoping that this is the beginning to a new life for me- and my family as well.

Thank you for taking the time to read this. I truly appreciate all you are doing for the medical field and all of us suffering. Your research and answers make us feel like human beings and not just some whack hypochondriacs. #thestruggleisreal

Hello Maggie – I hear your struggle. It is definitely very real. Taking a proactive role in your health is the first step, and you’ve demonstrated this. It’s difficult to provide individualized advice here. I highly recommend continuing to search for a doctor that better fits your financial situation. He or she would be able to provide recommendations specific to you. It would be well worth it in the long run.

I am heterozygous for the MTHFR C677T and also have Factor V Leiden (G1691aA) of Arg/Gln. I was diagnosed from a hormonal specialist after being on birth control too long and having extremely negative symptoms. I was on a protocol of testosterone, progesterone, baby aspirin and methylguard for several months before finally getting a normal menstrual cycle back.

My husband and I are planning a pregnancy in the near future and I am worried about miscarrying. My mother had 5 miscarriages ( I am the only child) and has also tested positive for the mutation.

What can I do to help ensure a healthy pregnancy given these conditions? Should my husband be tested for the mutation? If and when I get pregnant will I be considered high risk? What are the risk factors for the baby? Is down syndrome, ADHD and Autism a possibility because of my MTHFR? Do you know of anyone in Las Vegas that can help me ( there is no one listed on your link)?

Hello !: I’ve been taking the protocol, since 8 months ago, but two months ago my hair is fallena lot. I have hypothyroidismis so I went to the lab to check my levels of vitamins (A, B1, B5, B8, B12, C, D); Zic, calcium, hormone, free T3, free T4 T3 Revers, TSH, and iron profile. The results came out in most of them are well, except for iron which is slightly higher and B12 that is in very high levels. So I have some doubts.
Does the protocol is daily?
I take every day a HomocysteX Plus and Active B12 5000. I started taking this combitation 3 months ago. So ¿I can take every day Homocyste X Plus and take a way B12? or Why do I have this reaction?.

I am homozygous C677T. I am now in my late 40’s and just discovered this. Over the years I have had miscarriages including a still birth of a baby with severe neural tube defects. I have also struggled with fatigue, anxiety and depression. It is great to finally know there is a cause for all of this. Thank you for the protocol. It is very helpful. You mention that getting enough protein is very important and I noticed in the protocol to limit protein to .7grams per kilogram of body weight which is not a lot of protein. As a vegan I am getting .7 grams per kg but is that enough? Are there others issues with being vegan if I am getting that amount of protein? I eat a whole food plant based diet with no processed foods.

Tina – I’d take the 0.7 g/kg of protein as a guideline. Protein requirements will change based on things like increased physical activity or recovery from injury. With a vegan diet, it is important to determine if you are getting essential amino acids, which are those that only come from food. Those on a vegan diet can also potentially run into certain nutritional deficiencies: Vitamin B12, iron, calcium (if poorly absorbed), choline, Vitamin A and D, Omega 3 fats (EPA and DHA), and zinc. It might be worth finding a nutritionist who is comfortable working with a vegan diet to identify potential gaps in nutrition.

I’ve been looking for quite some time to find a comprehensive list of depletions caused by prescription drugs, or nutrient interactions with prescription drugs. This weekend I found two documents at http://www.NutritionalSolutions.net, a site dedicated to nutritional ontocology.

While I cannot confirm whether the data is accurate or not, I can say that most of my worst reactions have been to medications on the worksheet indicated as depleting folic acid (folate), B and D vitamins.

It’s a start, and hopefully one day a comprehensive, verified list will be readily available.

Dr Ben,
I have a heterozygous 677/1298 mutation. My son has autism and is non verbal at 4 1/2. I am desperate to help him and I know these mutations are common in autism. I give him a supplement that has methyl b12 and methyl folate along with the other b’s but he is extremely anxious even with a small dose. Is this normal starting out? Should I continue and add niacin? 5htp?
Thank you,
Grace

Hi Grace – Is your son working with his doctor on this? If you notice he is extremely anxious, he might be experiencing methylfolate side effects. It might be the case that he is taking too much/too often. It’s difficult to say whether to continue or not or to add something else without a full history. Read more about preventing methylfolate side effects. If you and your son are not working with a doctor knowledgeable in this area, it’s highly advised you have someone to guide you through the process. You can start looking for doctors who have completed Dr. Ben’s training here. Please keep us updated on your son’s progress. Wishing you and your son the best.

Grace,
Funny that’s my daughter’s name and she is showing other signs of this deficiency at the age of 6. Awaiting results as we speak. However, this is in regards to your son. It took me a few months to find the right dosage for myself and I was able to tell and verbalize how I felt. This must be not only frustrating for you, but your son as well. I suffer from anxiety anyway, so when I finally made the decision against my doctor’s orders to stop Metanex and try Dr. Lynch’s formula it some time and lots of trial and error to find the right dose for myself. I was fortunate enough to have a psychiatrist that was willing to learn about MTHFR and help me deal with my increase in anxiety and panic attacks while I was trying to figure out the best dose. Start at a very high dose daily and found I was taking more Niacin than anything thing else. Slowly I cut my dose little by little weekly until I discover that I only needed to 1/4 of a tablet of the B12 with Methofolate once a week. I so completely amazed that that was all I needed. I went to my doctor to have all my levels tested and discovered that my folate and vitamin B levels were so high the test did reach those levels. My doctor was amazed and apologized that for the last 4 years of taking Deplin and then Metanex that I had never had success like this. And my psychiatrist has actually learned so much about this and has had many of her patients get tested and a very percentage of them are deficient. It’s amazing just what can with this deficiency. The sad thing in my case is I have told everyone in both sides of my family (both of my parents are carriers therefore so are all of their brothers and sisters and their kids,etc…) No one in my family will bother to get tested. I know a few of them have this problem just because we share the same symptoms, but sadly because I am younger they will not listen and follow my lead and get help. I feel so much better, my depression, anxiety, fibromyalgia, and recently diagnosed ADD have improved and are under control for the first time ever. I can’t thank Dr. Lynch enough and I suggest you try different amounts at different times. I was on the highest doses of both Deplin and Metanex and assumed I needed the highest level of this supplement as well. Because this is a natural supplement that is not the cause. My body doesn’t metabolize as fast and it stay in my system for much longer than anything else I have ever taken. Last year my psychiatrist had some extensive genetic testing done on me and it revealed so much about the types of medications that work best for me and the ones that won’t. Due to this test I don’t have to take as many prescription meds as I have in the past and I believe it is in part due to the resolution of my MTHFR deficiency and this test. I would also advise you to have you son get some genetic counseling because there may be other genes that aren’t working properly that could be affect absorption and metabolizing issues. I hope my story will give you some hope that there are things you can do to help yourself and I hope that you will seek and find the help of a doctor that will help you do whatever is necessary to help your son! Not sure if you believe in prayer, but if you do be sure I will be keeping your son in my prayers because I know exactly how he feels and the fact he tell you makes this situation even more difficult. With you in hope and spirit!
Heather

Is there any way to make article printer friendly? I’d love to be able to mark it up and make notes on the side in a binder or something. I just found out my husband is compound heterozygous for both of the big ones and at least one of my children is hetero for C677T. I haven’t had the other 4 kids tested yet because of expenses. We’re working with a practitioner to help us walk through this maze but I like hard copies of these things. Thank you! I can copy/paste if not.

Thank you so much for providing this information. I am about to start using on my own your basic 677T(heterozygous) protocol as updated in 2015 (note-although my cfs doctor first alerted me to the mutation, she has limited knowledge on treating methylation defects and there are no certified doctors in the 3 state area where I live). I have chronic fatigue syndrome, rheumatoid arthritis and fibromyalgia.

In preparing to use your protocol, I have read volumes of information from your website including the blog questions and answers to arm myself with as much information as I can. My question is: are there any additional observations particularly regarding rheumatoid arthritis that I should be aware of?

Hi Dr Ben.
Im a bit confused about which supps to order for our son and daughter and hope you can help.

Our son tested pos for a single copy C677T heterozygous mutation. He was previously prescribed Methyl B12 + Folinic Acid shots every other day.

Our daughter tested pos for Compound Heterozygous C677T and A1298C mutations. She was prescribed shots of ME-B125 every other day.

Which B supplements would be the equivalent of these shots and at what dose? Also, in lieu of supplements, can daily vegetable juicing (4-6 organic juices) offer similar benefits as supplementation to correct MTHFR issues?

It’s impossible to give an exact dosage without doing a full evaluation.

I recommend searching for a doctor who can do a thorough evaluation and provide guidance. Start by searching the physician directory here.

Vegetables, especially leafy greens, are rich in folates including methylfolate so this is definitely the place to start. Some people with an MTFHR polymorphism are perfectly fine while others are very sick, so we have to consider the individual and not just MTHFR status.

Hi Dr Ben Lynch, Thanks for any help you can offer and for your good work, which has helped so many of us mutants !
Pls recommend which of your many excellent products I should start with. I am just discovered homozygous MTHFR C677t at age 69. I am looking for: B12; methylfolate; B6; important-for-MTHR-B vitamins without niacin; also which Mag (muscles, sleep). I want these separate so I can tritate up slowly and start them one by one (except I will take the Bs and methyl together). WHICH B12 is most easily absorbed? I had a B12 shot last week and for last month 400-800 mcg methyl. Also 2000 TMG. Doing OK-better. I know individuals are unique and I need to find what works for me, but would like to start with products most easily tolerated by someone (me) who historically hasn’t tolerated B vitamins well, or multi vitamins. Generally (over)sensitive to a lot in life!. I found out MTHFR due to rising homocysteine levels. I take naturally compounded thyroid 1 Gr daily, and some antioxidants, probiotics, fermented vegs, other vits. Depression, low energy, brain fog, hair loss , hot flashes (still) gut issues unless I eat very carefully. I MUST be SO careful to control symptoms(all my life). Been on natural Omnivore strongly plant-based organic healthy food & active green lifestyle since 1968, so my epigenetics have gotten me far with OK health in spite of MTHFR. But with age, things are breaking down and the genetic mutation is kicking in! Thanks for recommendations and for your work and products.

Hello Dr. Ben
I am 42 years old and have both A1298C and C6777T mutation. I have experiencing DVT in the past and have been experiencing extreme leg pain lately (both legs from hips to above the ankle). I had an ultrasound done and fortunately there were no blood clots found. I’m wondering if standing long periods of time in an idle position can have something to do with it. I ask because I notice when I’m at work and most of my shift consists of me standing, I can barley walk to the time clock without needing to take a seat on the way. At times it feels as though my legs are going to give out from under me. However, I can still ride my bike for an hour and not feel pain. Not to mention sleeping on either side proves painful. Should I not be standing Idle for long periods of time?

Hi Joanna – You should avoid standing or sitting idle for long periods of time, especially if you have a history of DVT’s. You may want to consider walking or doing exercises like calf-raises and/or wearing compression stockings to keep the blood moving throughout the day. Other questions to consider, are you drinking enough water throughout the day? Please consult your doctor if you have other concerns about DVTs.

Dr. Lynch, Thank you so very much for this information! Extremely comprehensive and detailed.
I am having a hard time finding information on the relation between Buerger’s Disease and a compound heterozygous or homozygous mutation of the C677T and A1298C MTHFRs. So far, the most research I’ve come across mentions either a homozygous on C677T or compound hetero on C and A. My friend is fighting for his life right now with Buergers. He just found out three weeks ago. I am urging him to get to a MTHFR doctor in Denver this week. He asked me to provide research for him… Is there anything you might be able to comment with regarding your understanding of Buerger’s and MTHFR mutations? Have you had a patient with this before? Is it possible it has occured now because he has a C677T mutation of some kind and was a smoker? Anything would help. Thank you so very much for this information!
Mercedes

Dr.Lynch, I have a 24 year old son with 1 copy of C677T and 1 of the A1298C. A year ago we were given 15mg Deplin, and everything happened the way you said it would, two weeks of amazing results, then everything went south!. I am starting from scratch again, everything is out of my sons system, the only thing he takes is the seeking health probiotic. My question is which should I start with first, the Optimal Multivitamin, or the Liposomal Gluthianine? My son is very sensetive to any meds, and supplements, he is also Non-Verbal, he cannot give us feedback, we are basically observing behaviors. This has been a long journey the last five years he was on so many different anti-psychotic meds, we just discovered this gene mutation about a year ago, it explains allot! Thank you so much for your tireless work you do on MTHFR.NET, it has changed our lives!

Vicki – Thank you for the kind words! I would start by reading the article on preventing methylfolate side effects as a first step. This outlines a general strategy that Dr. Lynch uses in similar situations. Please keep us updated!

Thank you for the response, I will add the lipoosomal Glutathione first at a small amount. We may not need the large dose of Folate that was originally prescribed with the Deplin. In regards to anxiety and OCD, depression symptoms, some naturopath MD’s say to use SAM’-E or 5-HTP. Do you see any problem with starting slow with the Glutathione, then multivitamin, then the SAM-E? Or do you see any problems with adding SAM -E if someone has both the C677T and the A1298C?
Thank you for any input!

I know this post has been up for awhile but I am just now learning about MTHFR. I am compound heterozygous and just recently figured this out after being diagnosed with hypo thyroid and still having a lot of issues. I am happy to say I have now been able to finally lose weight and I have the energy to do all the things I want. My question is my medication. I know it is a multivitamin but I can not find any link to it and MTHFR on the internet. My doctor prescribed me FOLTANX RF CAP and I take one a day. Again, I feel much better but I can not find it listed on any site for medicine recommendations for people dealing with MTHFR. Should I switch? Did he prescribe me correct medication?

Heather – FOLTANX is a combination methylfolate, P5P, and methylcobalamin, which many with MTHFR use as supplements. With that said, I recommend you bring up any concerns or questions directly with your doctor. Please remember that rather than thinking, “MTHFR = supplement with x, y, z,” we have to remember that MTHFR is one part of the bigger picture of your overall health. There is no one-size fits all formula for everyone.

I am homozygous 1298c and was diagnosed back in June with hypothyroidism. I am taking levothyroxine but my tsh has continued to stay elevated. I am wondering if there are other supplements I should be taking because of my homozygous a1298c mthfr mutation? I do take a raw prenatal that includes folate but I am no longer breastfeeding And I’m unsure what to do now. I have had no luck finding a doctor that thinks my mthfr mutation is anything to treat. Diagnosed in 2013 after 3 miscarriages in a row.

Jennifer – Very sorry to hear about the 3 miscarriages. Please see the Physician Directory to find a provider in your area who can provide personalized care. I also recommend reading this article on Prenatal Supplementation which covers Dr. Lynch’s program for women in similar situations as you. This is a good place to start. Please keep us updated on your progress!

hi, I recently learned i have this MTHFR mutation and one positive variant for the C677T and A1298C. i am also mercury toxic (have had IV chelation in the past, a recent hair test suggests mineral derangement and merc w/ other heavy metal toxicity). I was advised to take B vitamins but the “methyl” versions.since i started that i feel sick especially my stomach and digestive system. I then realized “methyl” anything tends to disagree w/ merc toxic people…so if i am correct ( i am eliminating the B vitamins to see if i feel better again) what then might i supplement with to help the MTFHR issue. Thanks very much for your time and help.
stan

I’ve been chronically ill from mould for a year now
Recently found out I am mthfr c677t homozygous.
I’m starting on half a capsule of the basic b Thorne capsules.
I seem to feel fatigued and have increase in joint pain and bad headache.
Could this just be detox?

Thank you for the great website. My daughter got the test and she has Mthfr, the C677T mutation, with a 30% chance of absorption. We (Myself and my four adult children) all started taking MethylB12 once we heard. No one else was tested, but we all have similar symptoms. I asked my Doc for the test, but he, of course, doesn’t think it’s necessary. i will insist on my visit this coming Monday.

We eat mainly gluten free and wheat free. We buy organic goats milk products, although I do use Kerry Gold Irish butter and Organic Ghee, All organic, free ranged eggs and meats, garden grown veggies, good grains like quinoa, etc. Our diets are mainly great. My one vice is drinking breves, and I probably need to cut those out…espresso with half and half, and not always organic half and half….

I believe that eating foods high in folate is different from eating the added folic acid. Am I correct? We eat dark leafy greens, lentils, etc etc.
Thanks,
Pamela

My doc found that I am homozygous C677T and recommended 2,000 msg of methylfolate. I do feel much better now that I added it, but after reading your website I see that I need B12 as well to avoid methyl trapping. B12 gives me a terrible headache every time after I try to add it. I also read that you should add B12 BEFORE you add methylfolate, but since it is too late for that, how do you recommend I proceed? Thank you so much for any advice.

I just received my test results and am MTHFR positive with a homo C667T mutation. I’ve been reading like crazy but i understand very little right now. I was tested because i have had 4 miscarriages and lost a baby at 22 weeks. I also have diabetes and fatty liver disease. Some of the things i’ve read suggest they could all be linked. This has by far been the best site i’ve found for info on where to go from here. I just haven’t felt like any one of my healthcare people know what to do with me.

If I am currently taking the Optimal Multivitamin do I also need to take the additional supplements listed? Optimal E, Liver Nutrients, Tumeric, Flow Fx, Liquid Vit. D. I was diagnosed homozygous with normal homocistene levels. I am also a Hashimoto’s patients. My GP is new to the MTHFR defect.

Hi, I recently learned i have the MTHFR issue with C667T and A1298C.
I started to take B12 methylcobalamin and 5MTHF. I was taking 1 milligram each and felt not well. So i cut it to 1/4 milligram each. as like you stated here I felt somewhat great for a week or so, then now i feel back to how I used to feel, sluggish, brain foggy,head achy, cant sleep, heart beating weird, not up beat etc. I am not sure what the right thing to do now may be. Alter the dose up or down or take some of the other things mentioned, like niacin? I am also mercury toxic along w/ several others like aluminum, tin, nickel,arsenic, lead. I have mineral derangement from the mercury. I appreciate your help very much.

My son is Mthfr c677t homozygous. He is a very poor sleeper and wakes up at night with tummy pains. I see that you recommend castor oil packs on the tummy so I am assuming tummy discomfort is due to the mutation ??? Would like to understand better what causes this pain. He is 4 years old and is on a very clean gluten free, dairy free and soy free home cooked diet. Trying to understand the root cause of his pain.
Thanks

I have a one year old that is about to run out of my breast milk which is full of your vitamins which I take daily. I was looking at the recommendations for supplementation again and saw that those vitamins are only recommended for children ages 4 and up. Do you have any vitamins or know of any that would be good to use with a one year old. I thought I remembered you saying that it’s important to supplement once they are done with breast milk and wanteed to look this up before I ran out.

Hi Dr Ben!
I just found out I am Hetero for C677T. My Drs office suggested I check out this site (thank you for all the wonderful information!!) but I’m a bit confused on your suggestions vs my dr. He wants me to take L-5 MTHF plus B12 folate (he likes Designs for Health brands). You say on here these things aren’t needed beyond the multi vitamin you suggest. So now I’m a little afraid to start these things because of all the side effects I’ve been reading about as it seems to affect more people who are like me and don’t necessarily need them. I’m considering sending my dr the ingredients in your multivitamin and see what he says. He’s a DO but I’m not too confident he’s well versed in MTHFR.

I also was curious why you say not to drink out of plastic? The water where I live isn’t the best and has flouride among other things. So I only drink bottled water or bottled juices. What do you suggest in this case? Thank you!!!!

Rachel – Please inform your doctor of EVERYTHING you are taking and decide together if you only need the multivitamin alone or with the other L-5-MTHF plus B12. See Preventing Methylfolate Side Effects for more information. Plastic leaches chemicals, especially BPA, which is a known endocrine disruptor (disrupts hormones). Even BPA-free plastic containers may leach other forms of endocrine disruptors. A good water filter and a stainless steel or glass reusable bottle is the best way to go. See: this article on reducing body burden. Wishing you the best.

Recently I had blood work done and my Folate & B12 levels were HIGH, Folate was 20.0 and B12 was 1230. When I researched this I discovered all about the MTHFR gene and got my DNA tested and I do have the heterozygous mutation. (rs180133 C;T) My question is shouldn’t my levels be LOW not HIGH? I am 48 and have chronic migraines, depression, anxiety and at 40 was diagnosed with the auto-immune disease Primary Biliary Cholangitis. I am new to this and still learning. Thanks!

Lisa – the tricky thing is that there are many forms of folate, and often labs do not differentiate between the different forms. You could have high folate levels but it might not be the right/active form of folate or the folate isn’t getting into the cells where it is needed.

I commented about 3 months ago asking for advice for a A mutation in myself. My spouse and I have suffered a twin loss at 20 weeks, a singleton loss at 16 weeks, and two early miscarriages. We knew I had the A mutation after we lost our 16 weeker, but just got my husband’s DNA results that shows he is homozygous for the C mutation. We both also have homo factor Viii (factor 8) and I have lupus and celiacs. We are Desperate for answers and protocol for how to achieve a viable pregnancy. We are working with top doctors in DC and Chicago, but are still not getting any protocol other than taking blood thinners, which isn’t helping. I’ve been taking folate (simple Heath) and B12 and a mess of other vitamins, and my husband will start the same now that we know his results. We would LOVE to fly out to you and see you in person or do a phone consult to see if there is hope for us. Please let us know if we can do that and what your advice is.

Hi Cait – Dr. Lynch is no longer available to do one-on-one consults. However, there are a number of other very capable doctors in the Physician Directory who may be able to help. I personally know Dr. Eric Balcavage and Dr. Bernarda Zenker. They are both excellent doctors.

It was suggested to substitute dairy for goat’s milk. Just wanted to let others know that I found my goat’s milk was “fortified” Those of us with this mutation need to avoid everything that has added folic acid and they are included in foods that say “Enriched” or “Fortified” you need to read every label.

Hi, Dr. Lynch I had recently taken a genesight test by assurex health for psychotropic test results. I have suffered from depression and anxitey for some years now, and have ahad fautigue and trierdness for over a year now with no change. i was hoping the results would help me but, no i am more confused as i read into the details. I am not fimiliar with MTHFR and am now starting to wonder if i have other health issues that i am not a wear of. The test includes four parts; Psychotropic results,MTHFR results,ADHA results and Analgesic results. my MTHFR reads; this individual is homozygous for the c allele of the C677T polymorphism in the MTHFR gene. This geneotype is associated with normal folic acid metabolism, normal serum folate levels, and normal homocysteine levels. i guess my question is should i be doing more tests or seeing a speicalist doctor in genetics?

Here is how I found out I have this mutation. Should I follow the above protocall? All this confuses me.
There are many unanswered illnesses I have had, very prone to colds, flus and even mysterious illnesses. Weight gain and bowel problems. I have lost 2 siblings to Colon & Rectal cancer and my mother had Dementia. Im scared! I am a 56 y/o female. Here is my report…….

This patient is heterozygous for the MTHFR C677T polymorphism (C/T) and has the normal or wild-type genotype for MTHFR A1298C
(A/A). The C677T C/T genotype may result in reduced activity of MTHFR, potentially leading to diminished production of L-methylfolate,
the active form of folate. Reduced levels of L-methylfolate lead to decreased production of neurotransmitters, reduced conversion of
homocysteine to methionine, and reduced s-adenosylmethionine (SAMe) concentrations. CNS neurochemical deficiency along with
buildup of homocysteine and decreased availability of methyl groups from SAMe may increase an individual’s risk for developing
cardiovascular disease. Additionally, this may predispose an individual to certain psychiatric disorders and/or memory and attention
deficits. Patients with high homocysteine values who are heterozyogous for the MTHFR A1298C polymorphism may consider
supplementation with the active L-methylfolate in combination with vitamin B12 (methylcobalamin). Increased homocysteine levels
may reflect other conditions (B-vitamin deficiencies, renal disease, etc.), which should be evaluated prior to initiating supplementationarly adulthood.

I recently found out I am homozygous for C677T. I’ve had some symptoms throughout my life that could be related to this: depression, anxiety, hyperactivity, distractibility, IBS type symptoms, etc. None have them have been horribly bad, but definitely there. I lead a pretty healthy lifestyle with a good diet and lots of exercise. Once I found out I had the gene mutation, out of curiosity I had some labs checked which included folate, homocysteine, B-12 and copper. All were perfectly normal. With these normal labs do you think I need to take supplements, or do you think I am managing symptoms with lifestyle?

Also, I’ve been searching for good evidenced based research. Do you know if any good quality research studies have been done related MTHFR mutations and their treatment?

I have learned a lot from reading much of your website. Thank you so much for your research and dedication. I look forward to learning more on my path to better and better health.

I am awaiting the results of my gene testing, patiently, not 🙂

Even without my results, nor ever having been tested for methylation, I am fairly certain that my results will come back showing that I am a ‘slow methylator’.

I do have a question in the meantime; about Silymarin (Milk Thistle), I have come across this herb a lot during my research of late. I am interested to know why you recommend this herb in particular. Especially considering your ‘update’ where you say that “regardless of MTHFR or not, the recommendations for diet, lifestyle and environment need to be considered by all!”

Hello,
I have been taking milk thistle for years. My doctor started me on it when my liver functions became elevated. Lowered them back to normal. If I stop taking it liver functions go back up. I don’t know if that is why it’s listed, but that is the sum of my limited knowledge and experience. Hope that helps.

Hi Dr. lynch
I am really wondering about how to approach my double hetero MTHFR c677t a1298 mutation because I ALSO have the CBS 699 hetero?? All of these recommend ions above list sulfur donors which I thought was CONTRINDICATED for the CBS?? MASS CONFUSION HERE…..please please advise how to support detox without interfering with the CBS mutation or adding sulfur donors which could potentially cause more harm?
Thanks in advance!
Sam

I started seeking health optimal prenatal vitamins at the first of February this year. After three weeks I began to have joint pain and muscle weakness. I lowered my dosage to only 2 pills a day for the last week and the joint pain has only gotten worse. – To the point where I just want to stay in bed. My neck has also been very feeling very stiff. It lasts all day and gets worse with movement and long inactivity. I am homozygous for the C677t MTHFR gene mutation.
Im wondering what the next best step is. I’m thinking I will completely stop the prenatals and see how I feel. I also just started a probiotic yesterday and maybe that will help. If I take niacin, do I take it just once or every day until symptoms disappear?
I’m also trying the only fruit and vegetable juice today to try and help get me some relief.
If there’s anything else I can do, I’d appreciate some direction.
I’m currently gluten free and try to limit my consumption of refined sugar and dairy. I also go on 30-45 minute walks daily.

Methylfolate gave me joint and muscle pain from hell. I would sit at the breakfast table after taking my morning dose, and the pain would come on within half an hour, and I’d be immobilized and weeping for the next 3 hours. My brain fog was so bad I could barely put it into words too. My doctor didn’t connect it to methylfolate.

I got a blood test from Seeking Health (it took 2 tries because they forgot to send the test and then sent the wrong one), and my methylfolate was off the charts. Not the unmetabolized folic acid- that was low- but methylfolate was very high.

I stopped the methylfolate and I’ve been trying for two years to feel normal again. I react to spinach now! Niacin did nothing but give me a rash, acne, and violent urges. None of the measures mentioned here gave me relief.

If you are pregnant or TTC, obviously folate is a concern. But why not just get your doctor to test your levels to make sure you’re adequate? Just because you have a polymorphism does not necessarily mean you need special supplementation or megadoses. The only way to know is to test.

First of all many thanks for this website full of precious information!

I am very new to the subject so I really feel overwhelmed. My head spins and I cannot stop reading. I am taking notes and list of the supplements…. Thank you!

1. I had few failed IVFs (only chemical pregnancies) and before last IVF cycle my clinic tested and discovered that I am homozygous for C677T. Also, test results said “negative for the A1298C variant in the MTHFR gene” – what does it mean? I hope that I dont have this other mutation as well?

2. Now, that I begin to understand, I found it puzzling that my homocysteine level was normal 6,7 – is it possible for homozygous C677T? Protein C and S was also normal.

[Then I followed my clinic’s directions i.e. 5 mg of folic acid (!) (additionally to 1 mg that I usually took with my prenatals) – It is thanks to my friend who somehow new that folic acid is a big NO. I didn’t believe her at first but started research online and I am in shock – how can the reputable clinic be so wrong!?]

3. For the last IVF they also gave me Lovenox and baby aspirin – I read that you don’t recommend those so what should be used instead?
Additionally, i was taking Dexamethason because of elevated activity of NK cells.

4. If you have any advise before the next attempt of IVF that would increase our chances…

5. Also, if we conciser donor eggs, would my mutation still be risky for the baby?

In terms of baby aspirin or Lovenox – I cannot voice a thought there – as they have helped many women before.

I’d also check for Factor V Leiden – it’s a common mutation in women with recurrent miscarriages as well.

If you consider donor eggs, your MTHFR mutation does still put the risk for the baby because of your possible limited methylfolate production. However, if you are eating leafy greens, then you are supporting your levels anyhow. Just because you have a MTHFR mutation doesn’t mean it is a problem for you – but something is contributing to recurrent miscarriages.

I’m chewing my way through your website, yum yum. An endless feast it is. Thank you so much.

I bought my DNA report from ancestrydna and have been quite frustrated with many of the amazing online tools because they will take only data from 23andme. On top of this, I can’t help resenting this microsoftian thrust to stomp out all other companies.

I’m trying to figure why this is happening, why good doctors, scientists, and programmers exhibit this type of marketing bias. The only thing I can think of prompts me to ask if you have an exclusive agreement with 23andme in which you get kickbacks for go through your chute?

If there is some other explaination, I am eager to hear it. This chip on my shoulder is getting heavy and I would love to chuck it off. As far as I can gather, 23andme isn’t superior to ancestrydna except in marketing and monopolizing; and their test costs twice as much.

Thank you. I hope you can see where I’m coming from. I can’t possibly be alone in this, can I?

peaceandloveandpeaceandlove

ps I had to switch to chrome because in safari the spam protection system would not accept “13” as the solution to the question asked: “sum of 3 + 10?” Your webgal will want to know.

Actually, it depends. Because Ancestry is designed for genealogy only, and 23andMe was designed for genealogy + health, 23andMe tests for a lot of SNPs that Ancestry simply doesn’t analyze. What we DO get from Ancestry can still be helpful when put through 3rd party tools that will take it (like Promethease and Nutrahacker), but an Ancestry test simply doesn’t contain the data some of the tools need, for what they’re looking for.

So 23andMe costs twice as much in part because they test for a lot more SNPs (and, I suspect, in part because of FDA-related fees over that fiasco with the health reports a couple years back).

I was diagnosed with bipolar disorder and treated with Lithium and Wellbutrin for over twenty-five years. Two years ago it was determined that the Lithium was negatively affecting my midney function. My psychiatrist said I needed to chnge to another psychotropic medication. I had also been diagnosed with hypothyroid as a result of the Lithium. Levothyroxine 88 MCG and Liothhyronine SOD MCG along with Vitamin D has successfully treated that condition. When I tried Lamictal I had an allergic reaction: a rash on my face. Instead of trying other medications I decided to seek non-pharmaceutical treatments with a naturopath for my mood disorder. Soon after going off psychotropic medications I was also diagnosed with peripheral neuropathy. DNA testing revealed “MTHFR poor activity 677CT/1298AC.

Since starting treatment by my naturopath my mood disorder has been more stable than it has ever been and I am very physically fit for a k3 year-old woman. I continue kto work full-time and enjoy a very active lifestyle. Although I did have a miscarriage during my first pregnancy, I subsequently had two healthy children and have two healthy grandchildren.

The problem continues to be the neuropathy. I have not been able to tolerate Optimal Liposomal Active B12 with L-5-MTHF or a supplement for neuropathy containing R-Alpha Lipoic Acid, B2, B6, B12 and Benfotiamine. I eventually experience side effects after initial improvement. The neuropathy actually gets worse.

Other interventions I have tried are counseling, acupuncture, chiropractic adjustments for a significant subluxation and massage. The neuropathy has improved but is still an irritating problem

As a result ofthe recommendatins on MTHFR.net I have started using Tumeric and that seemsto be helping. I am continuing to work with my naturopath who is supportive of my using recommended MTHFR protocols and doing whatever further testing is needed. I would appreciate specific recommendations before I attempt other supplements.

Hi, just wondering which is the best L-methylfolate to take please? I was told to take the methylfolate as Metafolin, but have since read an article which I cannot find anymore, that states that it is not the best one to take, but that we should take this one –
Folate (as Quatrefolic (6S)-5-methyltetrahydrofolate, glucosamine salt). Methylfolate, as Quatrefolic, is 99% pure 6S isomer. Thanks for looking. Cheers.

“For some, this can be life-changing in a positive manner. For others, it can be life-threatening.”

Finally, finally, some back-tracking and appropriate caution. But you know what? This should have come FIRST. The risks are just too high and too many people had to suffer, and that’s not ethical or fair. Consumers should not be guinea pigs.

My doctor was on the original list. I don’t see her there now, although on her c.v. she’s listing Seeking Health “accreditation”.

She told me methylfolate was non-toxic, safe, excess was easily excreted, etc. It did threaten my life. First through heart problems/hypokalemia, then suicidality and something akin to schizophrenia. I am deeply, deeply traumatized and physically scarred and aged.

I do note that in the post above, the side effects are still attributed to “detox”, and the remedy is folate-rich juicing. Who’s to say the side effects are not just plain old folate toxicity?

Hello,
Thank you for all the information. I recently decided to organize my boxes of medical records and came across my test results from 2012 that said I’m heterozygous c677t. My doctor at the time dismissed the results as insignificant. After reading through your information and some of the comments I feel he was absolutely incorrect, and could’ve saved me years of tests, doctors, surgeries, etc.

My medical history, like many others, is not a simple. I will try to keep this brief and only hit on what I think is currently relevant. I appologize in advance for the length. Here goes…

As a child I was depressed and suicidal. I was diagnosed major depressive, manic depressive, borderline, bipolar… You name it, they diagnosed it. Tons of different doctors, diagnoses, and pills. nothing helped. Attempted suicide more than once.

When I was 24 I was bit by a darling little tick that gave me Lyme, bartonella, and babesia (according to doc was one of 2 confirmed cases of Lyme in Idaho. Yay me!). Everything went downhill fast. Rolling arthritis, recurrent utis and sinusitis, neurological symptoms, cognitive dysfunction… The more time passed the more symptoms I had.

Moved to Texas, and finally got fed up with docs saying idk why you have had 3 miscarriages, or 10 utis and 8 sinus infections is the last 12 months. Did research and found Lyme doc, started iv abx. Multiple complications (I.e., catheter from Port broke and lodged in my right atrium and ventricle – apparently they hadn’t seen that before. They were all very impressed that it was laying across the bottom of my heart like that and had been for 18 days. First ER said it’s just PACs don’t worry about it.) later continued to get worse… Vertigo, losing time, tremors, uncontrollably head nodding – sometimes violent, unspecified follicular hyperplasia – lymph node, list goes and on and on..

Doctors didn’t want to treat me so they’d pass me off to next specialist. I become so ill I had to quit working and driving – kept falling asleep and losing time while driving. It got so bad that I couldn’t understand people when they spoke, sounded like gibberish. Phantom smells, auditory and visual hallucinations, visual disturbances, didn’t know if I was awake or dreaming… You get the point.

Husband was chaptered out of the military so I lost my insurance. IV meds were 3k a month had to stop. Couple months later husband tried to kill me and kept me locked in the house with him for 2 days… Escaped and moved to Nevada by my parent’s.

I came to NV in 8/13 and I’m significantly worse. Septicemia x 2 – pseudamonas, picked up VRE while in the hospital the first time. multiple recurrent infections – including VRE, kidney stones, decline in kidney and liver functions, multiple masses – brain, lungs, kidney, liver, and thyroid. I have Candida everywhere you can get it – one doc said it was in my blood too, but I doubt it, RA docs won’t treat because meds affected immune system, kidney and liver, immunologist and ID – no clue. Can’t afford to go back to Texas to see Lyme doc. On forth primary care.

Constant nausea, diarrhea – usually with significant blood, can’t keep food or water down – was on iv hydration until 2/29/16, but my picc line migrated and had to be pulled – also had a blood clot in my neck that visit.

Have had fifteen surgeries now. Seeing surgeons for port placement – number 4, b/l knee surgery, heel surgery -Insertional Achilles Tendinosis Surgery and need to have artificial disk removed and back and neck fusion, ooh and a disk in my thoracic since is collapsing.

I should’ve died several times – according to docs, but at this rate I think I will if I can’t fix some of this stuff. Running out of abx I can use. I’m on doxy, clindamycin, macrobid, and just finished levaquin for salmonella – five strains. Last septicemia took four months and three hospital admissions to get rid of.

1. Does anything jump out at you? I now it’s a lot of info to process, sorry. I also omitted a ton.

2. Can this mutation cause excessive adhesion growth? Last port removal doc said port and cath were completely covered after only being in four months. Choly surgical report says he couldnt visual abdominal cavity because of adhesions and he had to cut and cauterize several to get to and remove gallbladder.

3. Can this mutation cause masses to grow in multiple organs?

4. What should I do next? Tests?

5. I am already taking several of your protocol meds, but can’t stop antacids due to GERD, hiatal hernia, and nocturnal regurgitation – very unpleasant way to wake up

I’m sure I have several more questions, but I think I’ve already typed more than anyone wants to read. Hope I didn’t make it so no one wants to take the time to read through it.

Thank you, in advance, for any assistance, insight, or suggestions. Oh, and I apologize for any typos. I’m using my phone and auto correct has made this an insanely long process.

Forgot to tell you tick bite was in 9/09. So this has been going on for six and a half years.

Ooh, and ex husband gave me a few parting gifts (Cause I was, apparently, too healthy) – hep b, high risk hpv, and hhsv 2 – no symptoms yet, knock on wood. Which could be part of the rapid decline??

Could hep b cause a swollen liver? That’s a new one for me as of Feb.

Also, Nystatin tabs – 2 bid, oral solution, and diflucan 200 mg q day x 2 wks haven’t touched thrush or other Candida infection. Last time took 28 days of iv diflucan to cure it, but came back a month later on Nystatin tabs and rinse, and massive amounts of probiotocs. Suggestions?

I have c667t. I’ll start off with my history since I’m starting to feel lost and like I’m a walking pharmacy in all my efforts. I’m almost 33, currently trying to conceive after 2 pregnancy losses over the last 2 years. First loss was 18 wks after spontaneous rupture with clots behind placenta, 2nd loss at 11 wks again with large clots preceded by heavy bleeding for a month, also with strong heartbeats and normal development both times. Bleeding and clots were present for both pregnancies but 10x worse with the 2nd. I have tested neg for APS syndrome twice, neg for CF, factor V leiden, protein S deficiency, but extremely elevated protein C deficiency and no elevation of homocysteine levels. Fasting glucose, insulin, and vitamin D were ok, but acupuncturist believes my levels should be better so she has me on a protocol. My lipid panel is always slightly elevated. Mother recently died at 57 of sepsis, lung failure, and unexplained high levels of ammonia, she would go into psychosis everytime she touched alcohol, I can tolerate alcohol and only have 1 drink socially maybe once a month, father has kidney failure on dialysis and bad neuropathy, both parents had DM, HTN, and high cholesterol. I have hypothyroidism, my mother also, I have pcos, homozygous for c667t MTHFR (found out 4 months ago after getting out of network testing done ordered by acupuncturist). Husband is heterozygous for c667t (found out by doing 23andme testing spontaneously). HSG scan and hysteroscopy both negative. I’m not getting much more support for further testing by my ob or perinatologist. I have been on levothyroxine for years and recently demanded to increase my dose to keep my tsh levels below 2 since pregnancy requires me to increase dose both times. After both losses I’ve started acupunture, my protocol consists of the following: 1200-1800mg NAC, 1380mg fish oil, 4000mg myo-inositol, 400mg kanekaQ10, mykind organic prenatal which contains 1000 IU vit D3, 800mcg folate, 3mg methylcobalamin, 200mg niacin and a slew of other things. In addition, I take 1000IU vit D3 on days I get limited sun, 800mcg metagenics folapro L-5-mthf every other day due to cost and feeling foggy sometimes, 1000mcg b12 methylcobalamin liquid spray from mykind. I was also taking wen jing tang, xiao Yao san chinese herbs and vitex to support hormones and promote earlier ovulation since I ovulate late (28 day in my cycle). Recently ran out and haven’t continued since I’m in the 2 week wait period for hopefully a positive pregnancy. I am taking baby ASA 81mg and 200mg progesterone after ovulation to support pregnancy early on, discussed it with both ob and acupuncturist. This is my first time on the above protocol for few months now, after 1st m/c I only changed diet and still had a horrible m/c so I’m hoping this works. I’ve tried a gluten free diet after acupuncturist insisted, but am not very good abiding by it. I have a bad sweet tooth, but do try to avoid sugar as much as I can, try to eat more vegetables, mostly white meat, and occasionally fish. After my losses and seeing my parents suffer with ailments for years, I’m beginning to wonder if there is any hope for me and my future offspring to remain somewhat disease free. My acupuncturist recommends seeing a Dr. in my area that specializes in controversial immunological and genetic testing and therapies for infertility, but I can’t afford to at this time as they don’t accept insurance. Is there any other suggestions you can give me besides my current protocol Dr. Ben? Anything I can do differently to achieve pregnancy and carry to term? Your feedback would be greatly appreciated.

I have a question about heterozygous vs. homozygous. I’m currently looking at a 3rd party report based on my DNA obtained originally for genealogy purposes. I’m not sure if this particular report is looking at the same gene or not, but it does show several that are MTHFR-related. As an example, one says the “expected” allele is “C” and mine is “AG.”

Would that be considered heterozygous because the A and G don’t match, or would it be considered homozygous for mutation, because *both* the A and the G are non-C?

(I only use that as an example to provide clarity to the question. I’m more interested in the general answer regarding hetero/homozygous than in what it might mean for my specific gene.)

Hi i have been diagnosed with mthfr C677T. And just had my first injection of B12 hydroxocobalamin. Was wondering if that is the right b12 I should be taking. The first couple of days i felt really great and on the 4 day im mot feeling so well. So im not sure if i need to have another injection as my doctors wants me to see him in 2 weeks . Thank you

So happy I came across your site. I wanted to get your opinion. I am 30 years old, very healthy, absolutely no digestive issues, depression, or anything that coincides with MTHFR. However, with my first son I developed severe preeclampsia, needed to be on magnesium and needed an emergency shot of Vitamin K after delivery. He was born full term and healthy aside from reflux. A year after my son was born, I had a miscarriage at 8 weeks. I quickly became pregnant after that and was told to take 1 aspirin per day to avoid the preeclampsia and I went on to have a healthy baby girl. With that pregnancy I developed gestational diabetes (I am normally only 98 pounds) and only gained 12 pounds during my pregnancy. I went into preterm labor at 32 weeks and after a long hospital stay she was born at 35.5 weeks. A healthy baby girl aside from a milk allergy and reflux. After my girl I had another miscarriage (a chemical pregnancy) at only 4 weeks 2 days. My doctor decided to test me for Thrombophilia due to recurrent early miscarriages and severe preeclampsia. My results came back that I am heterozygote for factor V leiden (r506q) and heterozygous for the MTHFR (C677T). My son is 21 months old and has a speech delay- he does talk a little bit but not a lot. With that said, he is very smart,playful, knows the entire alphabet & can identify every letter, knows how to count to 20 and can identify every number 1-100, knows all the planets and I could go on. He loves all types of foods, a great eater and no digestive issues at all. He also occasionally walks on his toes but other then that he is very social, and developing great. Because I have this gene, does that mean he does too? Also, do you recommend changing his diet or adding supplements to help with speech? He is currently not on any vitamins or special diet aside from taking him off milk- we noticed he seemed more upbeat when he was off milk. Lastly, we’d like to have one more baby- do you recommend anything we should do before hand? Currently I take a nature made prenatal vitamin with added DHA, extra vitamin D and one daily baby aspirin.

For speech delay, Optimal Creatine – 1 tiny scoop (500 mg) every other day in a glass of filtered water, along with a pinch of the Active B12 with L-5-MTHF (1/8th of the lozenge) may improve it for your little guy.

Thank you SO much! I will be starting all this immediately for myself and my son! After consulting with my sister (Pharmacist) and his pediatrician I started him on the kids Optimal Multivitamin, although it says 4+, I give him 4 per day instead of 6 and he seems to be doing really well. I’ve noticed an improvement with his speech just in the last month of taking it. I am now pregnant again and have been taking the Optimal Prenatals along with the B12. I’ll be adding in the D and probiotics this week. Thank you for your help!

Dear Dr. Lynch,
Thank you for supporting our health in so many ways. I have 1 copy of C677T and have felt mush better. Now today, my granddaughter was just diagnosed at 3 years old. Can you please help with a protocol for children? I am appreciative they have been diagnosed early to protect themselves unlike me. I appreciate any recomnendations. She also has 1 copy C 677T. As a speech and language pathologist and recently a graduate of IIN in health coaching in a holistic way, I know that there was divine intervention to help me heal my children and grandchildren and hopeful reach so many more.
Many blessings,
Patricia

What is the basic protocol for supplementing a toddler and baby? I recently found out I have one copy and my son (14mo) was found to have two (both C677T). We were on a staggered shot schedule up until 7mo. and are also now getting ready to work on detox regimes upon learning about his copies so any advise on that would be very helpful as well. My husband and I are also planning to try for a second child this year and would also need to know what the basic protocol would be for a young baby. I can’t seem to find anything. Thanks so much!!

2) Yes they do – for way more reasons than being ‘overmethylated’. I don’t agree with this term. I believe that one can have side effects and issues from taking methylated nutrients – yes. But I disagree with the term of overmethylated. The side effects caused can be from countless other reactions going on:
– upregulated CBS due to increased SAMe
– increased dcSAM which no one talks about
– depleted dopamine/norepi/serotonin due to increased SAMe levels
– ?

Taking niacin is incredibly helpful to those experiencing side effects from taking methyl donors.

Folate is not a demethylating agent from my understanding. How can it be? Perhaps folic acid is – but not methylfolate. Doesn’t make sense.

I don’t have a question as such, more of a comment. Lots of fatigue, good amount of depression. Found out about MTHFR and things started adding up. Took the test and bingo, MTHFR C677t homozygous, MTRR A66G homozygous, MAO A R297R homozygous. Am taking the SpectraCell labs test. I’m assuming I could have a high serum B12 level and still be deficient? At least I hope so.

Hi,
I was recently diagnosed with C677t heterozygous and I feel terrible swelling when I take methylb12 and l-methylfolate. I have chronic Lyme and most of my pain is in my right leg and they bring out the pain in the worst way. Is this a sign of detoxing from adding them? Also, my homocysteine is pretty low at a 6 but my folate is at 12 on a scale from 1-24 and my b12 was a whopping 2000. Can I take just the folate? I’m so confused trying to wrap my head around it all. Thank you.

I have been told that being Heterozygous (one of each) and presenting with symptoms i.e. depression, anxiety, difficulty focussing which I do suffer with, is the same as being Homozygous and should medicate with enough Methylfolate as though I’m a Homozygous. Is this correct?

I just found out that I have a c665 homozygous gene. I am currently seeing a naturopathic doctor and he prescribed me Methyl CpG one capsule daily (contains 1,000 mcg of methyl-B12, 2,000mcg of methyltetrahydrofolic acid, riboflan 25mg, vitamin B6 50mg, and TMG 500mg.) I am afraid of taking it because I have been reading your protocol and I think this is too much to start with. I am already suffering from anxiety and depression and I don’t want to make this worse for me. I also have low t3, low testoterone, low DHEA, low estrogen, and adrenal fatigue. Do you think I should try it or should I start with Active B12 5000 and then Active B12 5000 with methalofate?

Hi, thank you for this amazing page. My daughter 2.5 years old has been diagnosed with MTHFR c677t homozygous mutation. I am trying to figure out how much of b12 and methalyated folate is safe to give her at this age. She has histamine intolerance and has been cover in wheal lesions “target hives” for 1.5 years since MMR vaccine. Not sure if I would be able to identify side effects so I would like a starting point on what to give her. Her doctor says 1mcg but that doesn’t seem right. Really hoping someone with knowledge of this condition can help me. I ordered the b12 liquid from seeking health but no idea how much is safe to give. 1 drop has 125mcg of b12. Thank you in advance.

My homocysteine level was 6.4 about 6 months ago since then by following the basic protocol my homocysteine has gone down to a 3.4. I realize this isn’t good. Should I not continue taking b12 and folate? I don’t feel great when I am on them but I feel like this protocol has messed with my thyroid. Thank you.

I had severe B 12 deficiency 2 year back. Took 1 year to recover after having sub lingual B 12 Methyl Cobalmin. I have been suppllementing on B12, D3 , K 2 and magnesium for 1 year. I get unexplained chest pain, head aches and ligh headednedd but the mri, catscans etc are all clear. CBC with differential is in range.
I blood level is 2000 plus for methyl cobalmin. The other vitamins I onlt take once a week bow.I still get nuerological symtoms. Any idea what could be causing it? Thnaks much.

Dr. Lynch,
I am taking Armor Thyroid because I have hypothyroid. I am also anemic and have to take iron every day. I also take B12, and multip-vitamin. What supplements would you recommend to get my thyroid healthy?

I found out today that I’m heterozygous C677T. I’m hoping this is the reason for all my health problems, I’m not very hopeful though. Everything I’ve read says that it doesn’t have much of an impact on my health as long as the environment/diet is good (which mine is fairly good). I have chronic IBS-D, Lichen sclerosus and Eczema/weird skin problems since I was a toddler (I am now 25). I had recurring ear infections from infancy until 15 yrs old (back to back infections). During that period of time I was on antibiotics, yes, that’s 15 years of antibiotics. I don’t know what my doctor was thinking. He probably didn’t want me to go deaf. lol. My digestive system is wrecked. I have anxiety and 16 chemical allergies. *It’s all lots of fun* The past 7 years I’ve been trying to fix my health issues with whole foods and good nutrition. Spoiler alert! Its not working! lol. I’ve done 3, doctor lead, elimination diets which resulted in ibs attacks that lasted months. My poor allergist was so excited to cure me with his elimination diet. lol. The only vitamin I currently take is vitamin C to decrease my absorption of ingested nickel. Anyways thanks for listening (Reading?) to my rant. lol

So much great information! Thank you Dr. Ben.
What do I do if I am compound for both? one copy of C677T and one copy of A1298C?
Do I use homozygous C677T protocol or heterozygous C677T protocol?
I’m confused.

I am struggling with various symptoms for the last 8 months including muscle twinkling/facilitations, altered senses, fuzzy headaches, tingling throughout the body, high heart rate and so on . After seeing a lot of doctors and after running many blood tests , i found out that i have 8 times higher the level of vitaminB6 in my bloodstream. The rest of the vitamins are in normal ranges . i did not take any kind of B6 suplements in my life .

Can this be related to MTHFR gene mutation ? If not , is there a posibility that there is a problem with another gene that is related to vitaminB6?

Hi! I was recently diagnosed w heterozygous C677T) and my homocysteine levels are normal and feel fine (except 4 weeks of unknown origin hives and intermittent heartburn ). My doctor told me to take methyl folate and methylated b12, but I have no idea how much. Since I have no specific symptoms and normal homocysteine, I feel like a low dose would be appropriate and am wondering if there is a minimum dose that would be safe?
As an aside, I did have two placental abruptions that ended in premature (but ultimately healthy) births…I wish I had known I had the mutation then!!!

My serum folate levels have been elevated since having my son 2.5 years ago. Throughout the pregnancy I was on 5mg folic acid (I have epilepsy and was advised to take the high dose, although I was off my medication lamotrogine for most of the pregnancy). I have basically remained at 54 nmol/L (5.0 – 45.0 reference range) and don’t eat anything with folic acid in it. Is there anything I can do to get the levels down? I’ve been taking 3mg of methylfolate for the best part of the last 1.5 years. We’re hoping to try for #2 soon and I was wondering if methylfolate will bypass the build up in my blood so that my body and a baby can use it? My Serum B12 is also elevated at 996 pmol/L (170 – 600) and I take Seeking Health adeno 3000. My levels weren’t elevated before supplementing but were at the lower end within the reference range – does this mean the 3000 is too much for me?

I’ve spent a lot of time trying to find answers to this but have had no luck. Hopefully you will have time to reply! Thank you in advance, Rebecca

Hi. I suffered with severe fatigue for 20 years before being diagnosed with the MTHFR gene mutation. I was put on Foltanx 1 x a day. It was like a miracle pill for me. I not longer have fatigue. I feel like I could still feel more energetic and would like to know if there is something I could take to help even more.

I am taking now Femibion 1 which contains 400 µg Metafolin and 400 µg folic acid. She also recommended to wait for 3 months before having another pregnancy. My question is if this is enough?( the only medicine given to my problem, I mean)
Thank you very much for your attention!

My doctor tested me for the MTHFR and I am homozygous for the C677T mutation – what an eye opener and explanation for many years of anxiety, dizziness, vertigo, swimmy head, infertility, and various gastrointestinal issues. I have been supplementing with Seeking Health Active B12 with L-5-MTHF (1600 mcg methylfolate and 2000 mcg methyl-B12) and Methyl Life Methylated Multi vitamin (500 mcg methylfolate). I also take additional B12 (2000 mcg hydroxy and 2500 mcg methylcobalamin) daily.
Recently ran new labs and a SprectraCell analysis –
Vitamin B-12 – 1463 pg/mL (high); B-12 – 19% (Adequate)
RBCFolate – 1432 ng/ML (high); Folate – 36% (Borderline)
Homocysteine, serum – 5 (sort of low)
Looks like blah, blah, blah to me but I think it’s telling me that I’m over-methylating and that while I have lots of folate and methylcobalamin in my blood, somehow it’s not getting into my cells. The rest of the SprectraCell analysis indicated that many micronutrients, in fact most of my Bs, are not reaching my cells. Doctor recommended I lower my supplementation dosage because of the over-methylation. I have been taking Prilosec for reflux for two years and he also recommends weaning me off that thinking it could increase my absorption. I’ve also just received my 23 and me results and will purchase your analysis tool to analyze the methylation cycle. Will this tool perhaps provide me any answers or data to help me and my doctor resolve these issues? Any suggestions from you and your readers would be greatly appreciated?

HI Dr. Lynch,
I’ve been reading a lot already on your very informative, competent and well researched website. But having listend to a lecture of Dr. William Walsh about the relationship between Methylation and Depression I ended up quiet irritated about the effect of methylfolate on neurotransmitter. While as Methionin and SAMe are Serotonine reuptake inhibitor,
Methylfolates seem to reduce the synaptic activity at Serotonin, Dopamin and Norepinephrine receptors. This could be fatal for patients with a depression disorder and already significant low serotonine levels. The benefit of getting the methylation work better in patientes with the MTHFR SNP could be ruined by reducing their serotonine levels even more. What can be the key to this dilemma? Any ideas?
I really would appreciate an answer and your opinion on that matter.
Thanks a lot for all the great work you are doing!

It is a complex picture and one we are always working towards understanding more.

I am currently learning more about neurotransmitter transport and storage.

If serotonin levels drop, one can take niacin or 5-HTP and or B6.

I’ve seen this happen to folks on methylfolate.

I’m not so sure methionine and SAMe are SSRI’s – you have sources for this information?

Methylation in general can speed up the breakdown of neurotransmitters – namely dopamine, norepinephrine, epinephrine, serotonin. So if methylation is faster than one can replenish the amino acid precursors – then yes, depression symptoms can occur.

Hi..my name is Vicky. This is all new to me and im feeling extremely overwhelmed. I have a 16 yr old daughter who just had DNA testing done a week ago. The test was ordered by her NP who she sees for her meds for her psychological problems. Because the test was ordered by a psych NP she was only able to test her to see how she responds to different classes of drugs to help her decide which meds to give my daughter for her chronic depression, ADHD, PTSD, OCD, and Anxiety disorder . The psychiatrist thinks she has a borderline personality disorder as well. The results of the DNA test showed she is MTHFR C677T Homozygous. The test wasnt done that would say if she has other mutations unfortunately. My daughter is always complaining of feeling sick like she has the flu and often has stomach aches and several times a wk vomits for no reason. She is not intentionally vomiting. She has headaches a lot, lack of motivation, brain fog and a really bad memory. She sleeps sometimes all day and gets up a couple hrs then sleeps several more hrs. She does have depression but often she feels exhausted physically and has no energy. Ive taken her to the Dr and to the ER more times than i can count and nothing can be found wrong with her. She does get frequent yeast infections and bladder infections as well. It seems shes always missing school from feeling so sick. Im at my wits end and dont know what to do. Because of so many mental problems i think Drs assume its in her head or shes lying. But i really believe she feels awful all the time. I dont know what to do first as far as treating her MTHFR. Her NP prescribed the worst prescription brand of Folic Acid with B6 and B12, its the first one on your list of commonly used prescriptive meds for MTHFR. My Insurance wont cover the brand you said was the best on that list. Im afraid it will make her sicker. I cant afford to buy the good stuff you have unfortunately. Youve said a person needs to get their body prepared to take a folic acid supplement. What do you recommend for a 16 yr old? And you give 4 suggestions to use if a person has a bad reaction to the folate. Are you saying choose one options or do all four? Which would be best for a teenager? And should i get her tested for Homocysteine level at her age? What tests, if any,do you think would be helpful for a teen in order to get a better idea of whats going on inside her? Im hoping a lot of my daughters mental issues are caused by this MTHFR. Right now shes on adderall for ADHD, Valium as needed for anxiety and birth control. The NP just ordered a script for Welbutrin for depression. I read where you say birth control isnt good for people with MTHFR. But neither is a baby, esp with all her issues. Ive been reading so much on your site for days. But i dont know what to do first with a teenager. And im so worried all the time about her health i dont want to make her worse. Unfort the NP who did the DNA test can only treat her mental issues. Ive looked all over on many websites and the internet for a Dr in my area who has training in MTHFR. But there are only a few and none on my Insurance plan. Most who are trained take only cash. So its a dead end for a Dr in my area. I just feel panicked and sad. And alone as can be. My daughter gets worse every week. I have no idea where she got the genes. Ive never been tested and her dads not in her life. I suspect i have at least one copy but thats another story. Anything you or anyone else whose experienced these things with a teen can suggest i would greatly appreciate. Thank you so much.

Work on her gut health, maybe some butyrate or Lauricidin or even coconut oil. A probiotic like saccharomyces boulardii (I like Nutricology brand). The yeast infections you mentioned will get better with these. Avoiding folic acid in foods, and sugar. Start with B12 and add methylfolate later. I personally think the over the counter things are better. Creatine helps me and helps get methylation going. They have it in any supplement store because body builders use it.

Everything I’ve read says Birth control is definitely not a good idea in her case (or any with an MTHFR mutation). Plus it’s been documented that BC is linked to depression. I get that she’s 16 and might be sexually active, Do you trust her to be responsible with another form of BC such as condoms? Also has her thyroid been checked? Not just the TSH either. I’m not a dr but aside from gut health, I would see about food sensitivities as well. Or trial an elimination diet (gluten, dairy, soy, corn, nuts to start), then add things in one at a time very slowly. I’m not like your daughters case but have struggled with depression and anxiety, as well as stomach problems and migraines for years. I’m no longer on BC (but am much older) and found out I had a sensitivity to gluten. I am still struggling with some energy issues but overall the migraines and stomach issues are gone since cutting both those things out of my life. Wishing you both the best and hopefully you can get your daughter some much needed help!

Thanks for your suggestions. To answer your questions, No i def don’t trust her to use condons. Shes not very mature or responsible for her age. She would never use an IUD or any other BC method. She is def sexually active with her BF of a year. The main reason she started on BC was to stop her from having irregular heavy periods and severe cramping. At that time she wasnt sexually active. I think shed go off BC if i explained how bad it can be for her but im afraid shell end up pregnant and that would be a nitemare for more than one reason. Besides the fact shes 16 and not responsible there are the health issues she struggles with and now the MTHFR which if she got pregnant shed need close monitoring of her pregnancy. I dont know what to do. I do think the BC is making her sick. Shes been feeling sick and has stomach aches and random vomiting and severe mood swings since she started on it a couple yrs ago. Could be the BC on top of the MTHFR and her other issues all contributing to it. Only way to know is to stop the BC for awhile to see. As far as her thyroid being tested i think only the normal test most MD’s do. Its been a year or 2 since shes been tested. What is the thyroid test besides the TSH? Shes seeing her pediatrician tomorrow for her yrly physical and i can request she be tested.

Vicki, Ugg, I am sorry for your struggles with this with your daughter. Hard stuff.

This thread is interesting to me because I have a daughter who has had similar issues (minus the BC/sexually active part). She is now 23 and has had many years of battling alot of the same health stuff you related about your daughter. My daughter is NOT (sadly) a poster child for hope in health improvements or healing, in spite of many things we have tried, from supplements to dietary changes, etc. etc. She currently knows herself well enough to know when to take methylfolate and when not to so that’s good and I would say her mental issues (which are perhaps less severe than your daughter’s) have improved over time…with maturity? The chronic bowel issues and nausea, headaches, unfathomable fatigue, sleeplessness, sensory issues, allergies and sensitivities, non stop pain, lack of motivation, horrible brain fog and memory, blah, blah, blah….she doesn’t have even five minutes on any given day, where she even feels marginally decent. And I have come to the conclusion that we can pursue every single health avenue from medical to alternative/holistic till we drive ourselves and her completely berserk….and it’s possible she may never improve. So, we take “vacations” from addressing the health issues, sometimes for a year or more, and then when I feel like I can tackle things again, we try a few more things (her brain function and illness prevents her from being the one who can do the research part of this deal so unless I figure it out–and I have done a LOT of research over the years– she can’t pursue help on her own). She chooses to be game to try any new things I unearth for her to try, so that’s good, but it seems like pretty much everything has been futile.

Thankfully, she is able to MAKE herself function to some degree or another a lot of the time,even if it’s not doing much, and she has siblings who truly love and understand her too, which is a big help, in my opinion. She can be bed ridden for days but a lot of other times it’s just the normal, not quite bed ridden and overall sick and she just mushes through, plodding along to do this, that or the other thing, but always in a state of distinct illness.

Some people get on methylfolate and it brings miraculous healing, within days. Others…. not so much, and, well, we just happen to be in the “others” boat.

Nevertheless, it’s worth addressing as many issues as you can with whatever means you have, and at the end of the day, we in our family, try to remember how precious life is and work to choose to be content in whatever circumstances we are given today. Maybe tomorrow holds something different or better in store, you never know 🙂 🙂

Feel free to contact me if you’d like to. delanobunch 5 at gmaildotcom

Thank you Evy for sharing your story and for your advice. I really appreciate it as i have no one at all to talk to about this. Especially not anyone who has experienced a similar situation with their daughter. Its a very hard road to be on. What i originally shared above isnt even everything. Ugh its so worrisome and stressful and really overwhelming. Im so glad i found this site and people to talk to. I will def keep your email and get in contact w you. Thanks again for taking time to write me. Take care.

Yes, it’s a hard road when there is no one to talk to and no one understands 🙁 Life isn’t meant to be done alone…we need others for support and encouragement in the hard places! My daughter too had more things beyond what I mentioned-its an endless and awful list. Hoping to hear from you some time 🙂

Dear Vicky:
I am so sorry to hear about your daughter. She is lucky to have you but i can imagine how stressful this is for you. I am glad you believe her. Many MDs have referred me to psychiatrists when there are other issues at stake. Here are some thoughts based on my own multiple experiences over the years, that may be helpful in some ways:

2) Folate: I am homozygous MTHFR C677T, However, folate, and B12 both increase my anxiety. I have tested fine on both, so despite the genetic situation, I stopped taking both after trying. They are not necessarily a silver bullet.

3) Is there any way you might have mold in your house? I had all kinds of crazy symptoms a few years ago, and i went to about 12 specialists ( i am fortunate to have very good health insurance) before one asked me about mold. I didn’t have any visible mold, but a mold inspection found the black mold behind paneling in my basement (i had moved into the house just a few months earlier). Many of my symptoms went away after the mold remediation.

It seems like a pain in the neck to do an elimination diet but there are so many gluten-free foods now that it is not that difficult to do for one month. As Rachel said, if she is not sensitive to gluten, it would be worth an elimination diet trial with dairy, soy, etc. She may be sensitive to more than one.

Any recommendations on supplements that I can take to make me feel better? My ND tells me that I need to Detox, but I am afraid to do a detox in case I get bad dieoff reaction and will not be able to get it out of my system. I had two cortisol shots this year for a shoulder pain and started Lugol iodine at about the same time and with no other changes gained 20 lb in two months.

I recently received my 23andme results and, in addition to being heterozygous for c677t and several methylation SNP’s I’m also homozygous for SOD2 a16v rs4880 (GG). I was researching this and read to avoid methylfolate so I’m unsure of where to go from here as at the moment while not yet on methylfolate yet I am suffering from fatigue, brain fog, anxiety, painful and swollen joints, and burning pain in extremities ever since having my last child 8 months ago.

What would you recommend supplementing with to treat both my methylation and homozygous SOD2 SNP?

Any help or just being pointed in the right direction to proper resources would me greatly appreciated!!!!

Dr. Lynch
I am homozygous for C677T. Suffer from mild depression and anxiety. I’ve taken Omega’s, Vit D, probiotic, and a quality multi for about a year now. Found out about my mutation and this site about 4 months ago. Started your regimen about 2 months ago as you describe above. Took your electrolytes and B12. Didn’t feel much as first. Tried taking the 5-MTHF, but it gave me severe headaches, which i have experienced from other suppliments before (such as l-theanine). Still taking the B12 without the methofolate, but i am out of the electrolytes and your store is out of stock. Interestingly though, the depression is gone and the anxiety is reduced seemingly only due to the B12! Thank you so much!!

Question, do you know when more of the electrolytes will be available or is there a comparable alternative, and any thought why just the B12 is helping even without the methofolate? Do you think i still need the methofolate?

Hi Dr. Ben,
I am compound heterozygous for C677T and A1298C. I take 800mg of methylfolate a day (prescribed by a chiropractor that I don’t go to anymore) and thankfully realized from this post that i might be taking too much. I can’t however take the methyl form of B12 – the back of my neck gets itchy, so I take the cycocobalamin – is that ok? My blood tests indicate that my B12 levels are okay. Please advise – thanks so much!

you may try the lozenge of just MTHF or use a liquid form of as liposomal MTHF.

Using just a multivitamin every other day may be beneficial for you. Need to determine what amount works for you. I don’t take MTHF daily or a multi daily – but about 5 days a week – depending on how I feel.

But the multivitamins with folate contain methylcobalamin (which gave me an itchy neck) and the ones that don’t contain folic acid which I know is no good. I would like to take a multi and don’t know what to do?

I was diagnosed MTHFR C677T Homozygous last week. I am severely B12 deficient; however, I am asymptomatic and wondering what this means to me. The only direction I received from my PCP was to go home and do my research, eat more leafy greens and take a methylfolate. Do I need further testing, do I need to follow the protocol above or do I just treat symptoms as they arise. Thanks in advance.

This does not quite address her existing issue of a severe b12 deficiency. *Is it safe* to give methylfolate to someone dealing with severe b12 deficiency?

Folate of any kind cannot treat low b12, and risks masking the anemia and exacerbating the neurological damage of low b12.

It’s not certain from Tina’s comment whether the b12 is being treated. It’s also not certain from her comment whether she’s actually low in folate. Seems to me like this needs to be established first before and specific supplement recommendations.

Hi Tina, something seems confusing here. It sounds like your PCP is treating your b12 deficiency with methylfolate, which is b9? That won’t be helpful and could be harmful- a b12 deficiency requires b12.

Some people require supplementation with both b12 and b9. But if you have a b12 deficiency, methylfolate will not correct it, and could make things worse.

Also seems strange that your doctor is telling you to research? There’s a lot of MTHFR quackery and marketing, and I include this site in that list.

Interesting Bev. You think this site is full of quackery and marketing, yet you are here? I work hard to provide people with loads of information at no cost. There is no hidden agenda here.

I provide links to products I’ve formulated as I know a ton about nutritional biochemistry. It is not easy to find effective supplements which is why I started Seeking Health. If people choose to buy them, they may. If they choose not to, that’s fine, too.

My goal is to support people.

I’m tired of people like you giving inaccurate statements when I work hard to help people out.

You can seek out other websites which give more credible information than this – good luck with that.

Dr Lynch has dedicated YEARS to helping people, even before he created Seeking Health.. which, btw, he created because it is extreme difficult to find supplements with correct ratios that people with various common genetic mutations require.

Have you ever even bothered to read through his research before referring to this as quackery? He is a genius and has changed lives.

Question: I am Homozygous MTHFR and take my B12 and Methalfolate regularly. I am on a Paleo Diet and have really felt better over the last few years. I’m not 100% yet (may never be). I went from a RF of 137 four years ago to a 31 today, so still some autoimmunity. Can I take LDN for the autoimmunity?

I have an inquiry about dosage for a 21-month baby – Trisomy 21 + MTHFR mutation. We know that we have to supplement with vit B, D3, K2, magnesium, zinc and folic acid, but in what doses for a 21-month baby? Any input would be greatly appreciated.

Hi Dr. Ben…
I was recently diagnosed with hetero C677T and have been prescribed MIC B12 and methylfolate injections 2x per week. The dose is 1mg each. The compounding pharmacy is no longer able to get the MIC B12 ~ my question is what would you recommend? I’d like to stop giving myself injections ~ can I take your supplements? I’ve been doing the injections for about 3 mos. Thank you for your help

Hi, I was taking b complex (metylocobalamin, methylfolate and B6 as p5p and also sintetic) before I knew I’m homozygous c677t. NOw my levels of folate and B12 ar fine, but B6 is almost 3 Times over the range. I have neuropathy because of this. I stopped the b complex. Should I take p5p or wait until it goes down?

hi doctor,
I’ve started taking the active b-12 with methylfolate and the multi vitamin. I have two copies of the c677t mutation and have struggled with intense pain, inflammation, swelling, fatigue etc for years. I’ve just in the past couple of weeks made the connection to my ailments and am trying out your supplement line. I have noticed significant improvement in body pain and stiffness and energy level is somewhat increasing. however, I have serious issues with swelling of my fingers and toes in heat or any time that I eat any salt, so I have eliminated it from my diet. The heat is unavoidable though, as I am working in southern India for the next five weeks. Do you have any suggestions to help ease the swelling? I am also taking vitamin c, electrolytes, and vitamin d. all whole food derived, (garden of life). I am a very active yoga teacher, I eat a clean diet, no gluten, dairy, no refined sugar aside from a little chocolate now and then, no salt if I can avoid it. I do drink soy milk, but this usually does fine in my system as far as I know. very few eggs. as soon as I get hot my fingers and toes blow up like balloons! what are your thoughts?? thank you so much.

what do you suggest to help with the painful and uncomfortable swelling on my extremities?? thank you so much.

I enjoy working out and my muscles hurt so bad like more than a normal person. I am homozygous C667T and on Metanx, I am wlow energy and I really interest in what kind or supplements I can take for soreness, like any BCAA’s? I’m really not sure what all I am actually getting with the metanx and I am also interested in something that can help with my metabolism. There are so many ingredients in supplements at vitamin stores. I am also nervous about protein powders and things since we can’t have so many different things. Your advise is greatly appreciated.

I am trying so very hard to understand all this information but I just can’t. I am AMAZED at how many people understand all this DNA, Snap, Allele stuff. I just can’t wrap my brain around it.

I so much happening to me and it’s getting worse. It started with developing Lichen Sclerosus, then my face started to burn like a sunburn but looks normal. That was in 2014. It then became that I got burning all up my esophogus and into my throat and mouth. Tinnitus followed. Then my skin all over started to burn. Had an MRI of the brain by a neurologist looking for Multiple Sclerosus but all was well. I was told it was just menopause (I am 55 and last cycle was right before this all started in 2014). I now have oral lichen planus and my legs are stiff when I try to walk after sitting for a while or being in bed. They kind of get better as I walk but I walk with a “waddle” still as I can’t seem to straighten my knee without a shock of pain under my kneecap (both sides). If I walk slightlyl bent, that doesn’t happen.

I had DNA done through Ancestry to find my ancestry connection but also was able to run the raw data through NutraHacker and Genetic Genie.

I tried for a couple of months to figure it all out but couldn’t and just put it aside. Now that the burning all over (top to bottom and what feels like inside to outside-but look just fine) I am trying to figure it out again. One day I THINK I am able to tell if I am MTHFR positive but other days I think it’s negative. I have mostly yellow zone +/- but now see that sometimes that means positive too.

I really do hate being “stupid” and seeing so many others “get” all this is making that worse. NutraHacker tells me what I should avoid and what I should supplement with but to be honest, almost everything I try either makes the burning worse or gives me heartburn.

Both my Vit D VDR’s are +/- but I have Sarcoidosis (1998-2001 and has been quiet since then…no steroid use) so while it shows that I need to be using Vit D, I am afraid to with the Sarcoidosis. Also, one of my D’s in the blood test were low (the common one..I don’t know which one that is right at the moment) and the uncommon one they check for is high. That’s without supplements. When I’ve tried taking Vit D (doctor suggested it when my D came up low), it too gives me heartburn. I’ve only come across a few others that get this too. When I try Fish Oil supplements, my urine smells so strong of fish, it’s embarassing so I don’t take that. I tried the methyl B’s (doctor approved me doing so) but they made my burning worse again. Then the report I have says to avoid Methyl B’s and in another section is says to take Methyl B’s. That was odd and confusing too.

Is there any place I can post my results to and have someone help understand it better? I see some websites that people ask questions and post their results but the answers are coming from people who know so much more about DNA that I can understand. Where are people getting all this knowledge???? I want to understand all this and hope to make myself feel better but I’m afraid this all over my head and too much to understand.

Thanks anyone for any suggestions one a beginner getting simple to understand help. My head is just spinning after spending the day on this again so I need to go do something mindless for a while.

I just saw a Naturopathic doctor for the first time. She wants me to take 2000mcg of methylfolate and 1000mcg of methylcobalamin with b6 and Riboflavin (Methyl Protect)
However, I just had labs done and it shows B12 high at 1860. Folate was at 12.26. I haven’t started taking this product yet and am not sure if I should. Test shows homozygous C677T. I have eliminated gluten for the past 6 weeks. If B12 is high and folate adequate, why supplement?

When you have the Homozygous mthfr c677t mutation your body wont break down Folic acid and therefor vit B12 wont go where its supp to. Instead it sits on the receptors that are suppose to break it down or utilize it. Because its on the receptors it will show in a blood test as if you have plenty of B12 in your body or to much. When in truth you have very little or none. Please use the protocol here that Dr Lynch suggests for those of us who are Homozygous for the mthfr c677t mutation. I wouldnt jump right in to taking B12 and Folate without preparing your gut and other things he suggests to do first.

Thanks, I have been following the protocol for a while now. I take probiotics daily, krill oil, Vit D/K2, and was even taking Ubiquinol with PQQ for a while there. Tumeric is the only thing I don’t take but will start now. I have taken B minus for a while but stopped recently. I have also taken Optimal Start in the past as well. So you’re saying that B12 is sitting on the receptors, this means I should or shouldn’t keep taking it? Does this mean I need more folate? (I was taking sublingual 500mcg of methylB12 for a few weeks but stopped) The labs were drawn even before I was taking it on a regular basis.

B12 is tricky. The high B12 your labs show is B12 in your body thats not breaking down. If you take Methylcobalamin B12 it is a form already broken down so goes straight to your brain. You have to experiment,,,as long as youve followed some protocol to get your gut and body prepared,,,then you most likely will be fine taking it. Just dont take B12 thats in vit supplements because its worthless to you and will just build up in your system and little will be broken down. Start slow as Dr Lynch recommends. As you inch up higher in dose ,,if you feel fine without neg effects such as anxiety or nausea then go to the max dose and see how you feel. Dr Lynch says to go by how you feel and that you dont even have to take it or folate daily depending on how you feel. I feel the same with or without B12 and folate. And i take Dr Lynchs supplements. Its really just individual.

Hello Dr Lynch,
I have had 4 miscarriages so far, after the last one I have been tested for MTHFR and I am compound heterozygous. I have ordered from seeking health L-5-mthf lozenge and niacin to be safe. I tried with 1/8 of the lozenge but I couldn’t handle it so I took 1/2 of niacin lozenge and the other half an hour later to snap out of it, leaving me in a bad state. I have started today with 1/4 of Folinic Acid lozenge and it seems fine. I live in Greece and I am trying to find were to have the exams you propose that we should have but most of them are unfamiliar with the subject. I have ordered a lot of vitamins + the prenatal. Will I be able at some point to take folate if I manage to work up my methylation with the follinic acid supplement? Should I try taking the prenatal 1/8 daily recommendation in order to built up the vitamins needed for the methylation process.

It is likely best to start with the prenatal first instead of a single nutrient. Folate and vitamin B12 are powerful nutrients. It is best to support all your pathways to prevent a blockage – so yes – I agree with you. Start with a capsule with breakfast and a capsule with lunch. Or maybe just one capsule with breakfast to start. Be sure you have some electrolytes too – especially some added potassium and magnesium.

Hello,
I am a 30 year old male and was was recently tested for MTHFR mutation due to some physical sypmtsoms I started experiencing in October. I was found to be homozygous for the C677T variant and negative for the A1298C variant. My neurologist initially prescribed Metanx, however, due to the monthly cost, he later recommended HomocystexPlus as an alternative, stating I could eventually “work up” to Metanx if desired, since he stated Metanx is more potant. I have previously been taking Vitamn B2 (Riboflavin) supplements, but stopped after finding out I was homozygous. I have been prone to side effects from supplements and other medications in the past, and wanted to see if starting on something like the “L-5-MTHF Lozenge” might be a safe option, and then work up from there depending on how it is tolerated? I would rather not supplement with too many Vitamin Bs if possible. I was recently tested, and all Vitamin B levels were within the normal ranges, and the Dr. did not seem concerned. The only things that were “abnormal” in recent testing were Vitamin D level (30), and homocysteine, which did recently come down from 19 to 13. Thanks so much for any suggestions!

I should add that I started the Vitamin B2 (Riboflavin) supplement in January 2017, after my labs showed in December 2016 that the Riboflavin level was low. I was retested again in early March, and was found to be in the “high” range, so I have stopped the Riboflavin at my doctors recommendation.

Riboflavin being high should not be an issue. One typically just pees out the excess. If you find that you need support of riboflavin again, then talk with your doctor about adding it back in. Using supplements correctly involves taking them for a period of time, stopping and then restarting as needed.

Thank you for the response Dr. Llynch.
Also, I have recently begun taking one Seeking Health L-5-MTHF Lozenge with B12 per day, and have been considering adding the Optimal Multivitamin Chewable. Would it be ok to take both of these together, or would that be too much L-methylfolate, as the multivitamin also has 400mg?

Also, how long would you recommend taking the L-mehtylfolate and B12 in general? My neurologist stated this is something I will likley have to take for the rest of my life, but I have hesitations about this.

Can you tell me how a homozygous A1298C mutation could cause clotting during pregnancy without raising homocysteine levels? I’d like to at least discuss lovenox for my next pregnancy – I just can’t keep going through losses – but I can’t get any doctors to take it seriously because homocysteine stays normal. Would love a study or something to point to for A1298C and rpl with normal homocysteine and/or an explanation of how clots develop without elevated levels.

Also, if they will not prescribe lovenox, is nattokinase really an effective substitute? Is it an anticoagulant or antiplatelet? Thank you!

Dr. lynch
What tests do you recommend someone diagnosed with MTHFR take? Can you list the most important ones? I’m homo A1298c. You tell us what to look for but what tests do we need to take to determine if we are functioning properly? If you already have a blog or article please provide the he link. Thank you!

It’s not possible to make recommendations for supplements based on snps. MTHFR I make general recommendations but not specifically. I also am quite clear that there should be lifestyle, diet and environmental changes implemented first as they are so important.

To get more information, I encourage you to look into http://www.strategene.org as it gives you a more complete genetic picture using true research and clinically relevant snps vs nonsense ones that most other reports have. It does not give you recommendations – but it does give you much information about how your genes work and are influenced by various things. We also have a great Facebook group where you can learn from each other – over 2,000 people.

Do stick to your green smoothies and liver if you feel great from them. Be sure to use organic grass fed liver!

Hello Dr. Lynch, I have recently begun taking one Seeking Health L-5-MTHF Lozenge/B12 per day, and have been considering adding the Optimal Multivitamin Chewable. Would it be ok to take both of these together, or would that be too much L-methylfolate and B12, as the multivitamin also has 400mg of L-Methylfolate?

Also, how long would you recommend taking the L-mehtylfolate and B12 in general? My neurologist stated this is something I will likley have to take for the rest of my life, but I have hesitations about this.

I would consider alternating them. It is best to take a multivitamin in the morning with breakfast. Then if you feel fatigued later in the day, you can take 1/4 or 1/2 or all the B12/MTHF lozenge as needed.

You take them as you feel you need them. I take Optimal Prenatal Protein Powder about 5 mornings a week as my multivitamin and two days I go without vitamins completely – typically – unless I am presenting or at conferences then I take a fair bit 😉

I am homozygous for MTHFR C677T and also have POTS. My symptoms are fatigue, dizziness, anxiety, nausea, insomnia, nerve pain. My nutreval came back normal except for extremely low levels of vitamin C and glutathione. Homocysteine is 8.3. Whole blood histamine is 79 (a bit high, which I believe makes me an undermethylator?) What is your recommendation for a protocol? I am very sensitive to supplements due to my condition. Also, I have heard that choline can be useful for POTS. What are your thoughts? Thanks for your help.

Hi dr,
First of all sorry for my english, Im writting You from Croatia.
I just recently foun out I’m heterozygous a1298c and pai1. I have a beautifull daughter of 2 years. Shes an ivf baby. Through strougle for baby #2 I foun out this diagnose. I ordered Thorne basic prenatal.Hope it will help my fertility. All of my life Ive been anemic with iron of 5….on the lowest range. Now I found out its 35…waaaay high. Probably due to mthfr. Should I still take Thorne that containes iron, or should I avoid taking iron? I also ordered Jartows gluthation. I read it could help with detox. Am I right? Should I take it?

If your iron is high, then you should not take a prenatal with iron. I have a prenatal without iron here.

Glutathione is great to take. I am not sure Jarrow’s glutathione is useful. It needs to be liposomal glutathione or it likely won’t work well. I am not sure it is a good idea to take glutathione during pregnancy. It depends on your situation. Talk with your doctor. Good luck and have a great pregnancy.

Good morning Dr Lynch , I just made the SAM/SAH test by health diagnostics but for 15 days before test I stopped my supplementations for methylation (b12, methylfolate ECC). Do you think the test will be very influenced and my methylation rate will be lake I never supplemented for improve methylation ?
Thanks
Daniele

Would it be possible to reproduce or scientifically create the actual enzyme that we are lacking, instead of trying to ‘micromanage’ the entire methylation cycle? I, like many others, am unable to tolerate most of the recommended and necessary protocols and was just wondering if somehow ingesting or injecting the actual ‘missing’ enzyme might not be a possible therapy or treatment.

Trackbacks/Pingbacks

[…] Learn the basics of methylation while identifying common genetic mutations, which may alter methylation processes – especially the MTHFR mutation. Other genetic mutations mentioned are COMT, MAO A and CBS. Learn how to identify candidates for MTHFR genetic testing along with understanding the basics of how the MTHFR enzyme is so critical to our biochemistry. MTHFR Protocol: http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/ […]

[…] side up: the motherfu*ker gene problem doesn’t appear to be that big a problem. Read this page about C677T (which also provides some sound management advice) and this page about the A1298C (these are […]

[…] to learn and make changes. These days it’s hard to recommend a protocol but I started off with Dr. Ben Lynch’s MTHFR C677T protocol and this video. Eventually I found practitioners and supplements to help me and I found my […]

[…] doses of folic acid, it's wrong. This is doctor's advice for anyone who has this gene mutation: http://mthfr.net/mthfr-c677t-mutatio…ol/2012/02/24/ The biggest differences in recommendations between these two types of mutations are: folic acid […]

[…] If you have MTHFR, the first place to start is http://www.mthfr.net. Dr. Lynch has compiled a comprehensive list of things you should work on. At first this list may be daunting, but just take it slow and work on it a little at a time. READ THIS FIRST and then read his Basic Protocol. […]

[…] Smoore, are you talking about MTHFR? I have it too. I was diagnosed after our loss. Women with MTHFR should take 1-2 mg of folate/methylfolate instead of 3-5 mg of regular folic acid (that's common advice, but it's outdated). That's what I have researched: http://mthfr.net/mthfr-c677t-mutatio…ol/2012/02/24/ […]

[…] on Dr. Ben Lynch’s extensive experience. Dr. Lynch provides a protocol for the MTHFR defect C677T here and while he doesn’t also indicate an approach for 1298C, you can assume the protocol is the […]

[…] to chia but I’ve been eating more flax seeds. Dr. Lynch who writes the MTHFR.net site has this protocol for folks with the homozygous C677T mutation with overall recommendations in addition to his […]

[…] and quickly to the supplements needed to help bypass this MTHFR mutation. I’ll be following Dr. Ben Lynch’s protocol with the blessing of my medical team. I am grateful they are so supportive of me taking this […]

[…] in the infants especially for women who have a genetic variation in their methylation metabolism, (MTHFR 677 TT, CBSrs234715 GT + TT). [9] People with problems in the methylation pathways may need to take a […]

[…] like you’re taking one step forward and two steps back. Just don’t give up. The basic MTHFR protocol is also found at mthfr.net, but I highly recommend getting tested and seeking guidance through a […]

[…] age. Those who are homozygous for this this gene mutation (2 copies), can follow a very specific nutrition/supplement/lifestyle program to help compensate for the mutation. Most importantly, you cannot take ANY folic acid in […]

[…] MTHFR C677T Mutation: Basic Protocol General Side Effects If you are feeling improvement consistently, then you are on the right track. If you begin to feel heavy, tired, dry mouth, irritable, ‘toxic’, or otherwise ‘not right’, then something in your protocol needs to change. These are all signs that one must listen to otherwise you are potentially increasing the circulation of toxins and not eliminating them properly. These side effects can be eliminated quite quickly through a pure vegetable and fruit juice diet for at least one day. This means producing your own juices at home via a quality juicer such as Champion Juicers. Prepare mostly vegetable juices with some fruit juices to increase the taste. Taking a capsule of Neutralize or some Niacin also helps offset many side effects. […]

[…] multi-vitamin likely contains folic acid. Avoid taking antacids as they block B12 absorption. The list goes on. And use caution with drinking alcohol and smoking as they often impede the methylation […]

About Dr Ben

My story is long and can get pretty involved so I am going to skip many details and get straight to significant life events. I feel once you understand who I am as an individual based on my experiences, you and I will resonate on a deeper level. After all, DrBenLynch.com is not about me - it is about how I can help you.

Life experiences change a person. Or do life experiences create a person?